NAVIGATING THE INTERSECTION BETWEEN PROFESSIONAL SUCCESS AND SEVERE MENTAL ILLNESS: SUCCESS DESPITE THE ODDS by Lisette Suzanne LeBlanc B.A., University of Toronto, 1986 M.A., University of Toronto, 1987 Ph.D., University of Toronto, 1995 M.B.A., University of Northern British Columbia, 2008 THESIS SUBMITTED IN PARTIAL FULFULLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF EDUCATION UNIVERSITY OF NORTHERN BRITISH COLUMBIA March 2019 © Lisette Suzanne LeBlanc Abstract This study analyzed 13 stories of successful individuals who have serious mental illnesses (SMI). Those who are diagnosed with schizophrenia, bipolar, or major depression, are more likely to be unemployed, and if working, have higher turnover, and work part-time in low paying jobs. Despite this fact, there are highly-educated and professionally-successful individuals with an SMI. I conducted a content analysis of published autobiographies of successful individuals who describe their experiences of navigating school, work, and their SMIs, to explore what major themes emerged from this group. My results suggested all the individuals faced significant challenges as a result of their disability but were able to use coping strategies including a strong drive, a belief that they could achieve their goals, a determination to face obstacles, and a drive to achieve their goals. In doing so, these individuals have shown that success in education and employment is possible despite their challenges. ii TABLE OF CONTENTS Abstract ii Table of Contents iv List of Tables vi Acknowledgement vii Chapter 1 Introduction Background to the Study Individual Level Factors Structural Factors Stigma Improving Employment Experiences Success Despite Adversity Purpose and Significance of This Study Research Questions 1 3 3 3 3 4 4 6 7 Chapter 2 Literature Review Contributing Factors to Lower Employment Rates for Those with Mental Illness Individual level factors Educational Attainment Structural Factors Work Organizational and Supervisor Attitudes Job Factors Public Policy and Programs Assisted Employment for Those with an SMI Stigma Looking at “Success” Stories Summary 9 9 Research Design Reliability and Validity of the Data Collection and Analysis Ethical Concerns and REB Why Autobiographies? Data Summary 27 30 31 32 34 35 Chapter 3 9 11 13 13 13 15 16 17 18 19 24 iii Chapter 4 Results and Discussion Participants Results Individual Level Factor Nature of illness Severity of symptoms Age of onset Frequency of illness Hospitalization Medication Compliance and Symptoms Social Skills and Interactions Coping Strategies and Personal Qualities Drive and Willpower Passion Turning Negatives into Positives Being ok With Being Alone Putting on a Mask Negative Coping Strategies Education Getting Support Support from School Support from Work Nature of the Work Organizational and Work Structure Job Accommodations Social Policies and Legislation Stigma Public Stigma Self-Stigma Structural Stigma Intersection Between Academic and Professional Work and Illness How Work Environment Influenced their Wellbeing Reason for Going Public Conclusion Question 1: How Have These Individuals Successfully Navigated their Educational and Professional Lives with the Disorder? Question 2: Is there any Connection Between Their Choice of Education and Profession and Their Mental Illness? Question 3: How did Stigma Influence their Journeys and how Where they Able to Overcome the Effects of This Stigma to Succeed? 37 37 43 43 43 45 48 49 49 51 53 55 56 59 59 60 60 61 61 64 64 67 71 71 72 72 74 74 78 80 83 90 91 93 94 95 96 iv Chapter 5 Question 4: Why did They Decision to Write a Public Account of their Lives? Conclusion Successful Navigation of Educational and Professional Lives with an SMI The Connection Between Their Education and Profession and Their Mental Illness Limitations Future Directions Lessons for Mental Health Professionals References Appendix A 96 98 98 102 103 104 105 107 Brief Biography of Each Writer 117 v List of Tables Tables Pages Table 1 Authors’ Year of Birth, Gender, Country of Birth, and Disorder 38 Table 2 Nature of Disorder in the Sample Compared to the Overall Population 39 Table 3 Reported age of Onset of Illness and age of Diagnosis of Illness 40 Table 4 Level of Education, Employment, and Notable Achievement of Participants 42 Table 5. Forms of Stigma Reported by Authors 75 vi ACKNOWLEDGEMENTS The idea for this project was decades in the making, but became a potential thesis topic after I conducted two interviews for my graduate research course. Two remarkable women, Carli Staub and Sarah Curtis, graciously shared their personal stories with me and showed me why this story needed to be told. These two women, the authors of the 13 autobiographies in this project, and the many more individuals who navigate their lives with an SMI demonstrate that anyone is capable of remarkable things if they believe they can and if we, as a society, create more flexible and accepting structures . In my journey to complete this thesis, I encountered many wonderful and supportive individuals who have demonstrated how easy it is to be caring and compassionate and how doing so makes the world a better place. To my fellow students, faculty, colleagues at Northern Health and the Crisis Prevention, Intervention, and Education Centre for Northern British Columbia, clients, running community, friends, and the best next-door neighbours anyone can ask for. Thank you! I am very grateful for all the support and guidance I received from my supervisor, Dr. Andrew Kitchenham. It made all the difference. I want to express my gratitude for my thesis committee members, Dr. Henry Harder and Dr. John Sherry, for their support of this project and their helpful suggestions during the entire process. I also want to thank my external examiner, Dr. Tammy Pearson. The thesis is a better product as a result of the input of all these individuals. Last but never least, I am forever grateful for my family: Johanne, Kristian, Denny, and Erik. Your love and support has meant more than I can state in mere words. vii Chapter 1: Introduction Work is a fundamental part of our lives. It can provide meaning, purpose, selfesteem, structure to our days, and a feeling that one is connected with the larger social world. At a practical level, work provides access to financial resources that enables individuals to support themselves and can offer benefits (e.g., short- and long-term leaves, flexible work options, and extended family assistance programs) that can make life easier. The majority of Canadians are currently employed or would like to work (i.e., unemployed). The employment rate for all Canadians over the age of 25 for the year 2017 was 63% while the unemployment rate for this population was 6% (Statistics Canada, 2018). Yet, for Canadians with a disability (defined as mental and/or physical), the employment rate in 2012 for those aged 25 to 64 was 47% compared to 73% for those individuals without a disability (Arim, 2017). The unemployment rate also differed between these groups but did so to a lesser extent (7.9% for those with a disability compared to 5.6% for those without). A key reason is that there are many more individuals with a disability were out of the labour force, that is, not employed and not looking for work, than their non-disabled counterparts. The level of disability affects both employment and unemployment rates. The Canadian Survey on Disability divided disabilities into 4 categories ranging from mild to very severe: Those with mild disabilities were employed at the rate of 65.0% and their unemployment rate was 6.5%; for the moderate group the rate for employment was 52.9% and 5.7% for unemployment; those with severe disability had an employment rate of 41.2% and 6.5% unemployment rate; and finally the lowest employment rate was for 1 those with a very severe disability at 25.9% and an unemployment rate of 6.4% (Arim, 2017). These data suggest that those with more severe disabilities are much less likely to work and more likely to leave the labour force completely. Data on the employment and unemployment rates for individuals with a mental illness are harder to find, yet what exists suggests that this group is much less likely to be employed than those without a mental illness. Luciano and Meara (2014), using American data from 2009 to 2010, found that those without a mental illness had an employment rate of 75.9%, those with a moderate mental illness had a rate of 68.8%, and those with a serious mental illness only had a 54.5% rate of employment. Crowther, Marshall, Bond, and Huxley (2001) estimated the unemployment rate to be as high as 85% for this population, while Burns et al. (2007) noted that “unemployment for people with mental-health disorders is very high, with rates up to 95% for those with severe mental illness” (p. 1146). In addition to difficulties accessing work, individuals with mental illness have more challenging experiences while at work. They are more likely to work part-time, have low status jobs, earn less money, have higher turnover, and are less likely to be promoted (Baldwin & Marcus, 2007, 2014; Brouwers et al., 2016; Carmona, GomezBenito, Huedo-Medina, & Rojo, 2017; Cook, 2006; Teasdale & Deahl, 2007). This problem is not a small one as an estimated that 20% of individuals suffer from a mental illness and almost one third of people will have one at some point over their lifetimes. Smetanin, Stiff, Briante, Adair, Ahmad, and Khan (2011) argued that the prevalence of mental health disorders will increase in the future which means that over time it will touch an increasing number of people. 2 Given the poor work outcome for those with a mental illness, understanding the barriers to employment and the factors that make it possible for this population people to be successfully employed is important. Background to the Study There is an extensive body of work that has explored the barriers that help explain the poor labour market experiences of individuals with a mental illness. The results of these studies shed light on a web of factors that influence people’s experiences at work. These studies identified three main categories of barriers: (a) individuals level factors, (b) structural level factors, and (c) stigma. I have divided the literature based on these three categories. Individual Levels Factors At the individual level, variables such as the nature and severity of the illness, social skills and support, education, and personal drive or ambition have been found to impact access to work and work experience (Carmona, Gomez-Benito, Huedo-Medina, & Rojo, 2017; Cook, 2006; Ellison, Russinova, Lyass, & Rogers, 2008). Structural Factors The structure of schools and workplaces also influence how well individuals do: Supportive systems providing flexibility and accommodations when needed have been found to be helpful (Kirsh et al., 2015; Villotti, Corbière, Fossey, Franccaroli, Lecomte, & Harvey, 2017). Stigma A central factor in limiting the experiences of those with a mental illness is the stigma that permeates our society as whole, institutions such as work and education, as 3 well as in individuals. Hand and Tryseenaar (2006) suggested that mental illness is one of the “most highly rejected status conditions in Western society” (p. 166) and other studies have consistently found that employers are reluctant to hire individuals with mental health (Baldwin & Marcus, 2007; Stuart, 2006; Thornicroft, 2009). Improving Employment Experiences Given these barriers, academics have studied what could improve the employment experiences of this group of individuals. These studies have focused on pre-employment vocational skills training, job search assistance, employment counselling, and on-going support while employed including coaching (Cook, 2006; Crowther, Marshall, Bond, & Huxley, 2001; Gowdy, Carlson, & Rapp, 2004; Hanisch, Twomey, Szeto, Birner, Nowak, & Sabariego, 2016; Kirsh, Krupa, Cockburn, & Gewurtz, 2010). Some have stressed the need for anti-discrimination and mental health education and policies in organizations to remove the barriers caused by stigma (Hanisch, Twomey, Szeto, Birner, Nowak, & Sabariego, 2016). Others, such as Corrigan, Markowitz, and Watson (2004) advocate changes to laws as a way to increase the level protection against discrimination for those with mental illness. These strategies, when implemented, have ameliorated the experiences of this population, but many barriers to success continue to exist for this population as evidenced by the continuing low levels of employment cited earlier. Success Despite Adversity One area that has received relatively minor attention is the exploration of how those with SMIs have succeeded and thrived. The studies that do exist have looked at factors that facilitated such success. One of the earliest studies in this area is McCrohan, 4 Mowbray, and Bybee-Harris’s (1994) study of 279 individuals with psychiatric disorders about their experiences and expectations of work, some of the obstacles they faced in employment and the role of work in their lives. In this population, 40% were employed and the authors discovered that a small minority (2%) were employed in managerial or professional jobs. A national survey of 347 American individuals with an SMI conducted between 1997 and 1999 focused explicitly on that minority of individuals who had middle to upper level professional and managerial jobs and resulted in a numbers of published studies on this successful population (e.g., Ellison, Russinova, Lyass, & Rogers, 2008; Ellison, Russinova, Massaro, & Lyass, 2005; Russinova, Wewiorski, Lyass, Rogers, & Massaro, 2002). This research reinforced the fact that success is possible for this group and uncovered some of the factors that were linked to success of this population. Ellison et al. (2005, 2008), for example, found that success was linked to lower severity of symptoms, capacity to manage their symptoms, and higher levels of education. Russinova et al. (2002) used a subsample and looked at those respondents with schizophrenia (n = 59 or 12% of the larger sample). Sixty-five percent of the sample were found to be working full-time or had done so in the past. The types of occupations these individuals held included managers and minor professionals (37%), and technician and semiprofessionals (27%). Almost half of the sample (49%) had a college or graduate degree. Like the results cited in the studies using the larger national sample, these authors found that the most successful participants were better able to control their symptoms so that they did not interfere with their work (24%). This group also believed that it was their 5 own drive to succeed and/or their will-power (20%) that explained their success. A small minority (14%) received modifications or accommodations to their jobs. O’Day, Killeen, and Goldberg (2006) found that 67% of their sample of individuals with an SMI were employed in “white collar” or professional jobs. The authors found that those who were successful in their jobs reported having a strong work ethic and had pride in the work they did. This literature had begun to shed some much-needed light on this small but important population but more work is needed to fully understand the experiences of individuals with an SMI working in professional jobs. Service (2004), stated that “if we hope to understand the complicated relationship between mental illness and work, we simply need more and better observations of people as they live and experience both” (p. 27). Purpose and Significance of This Study The purpose of this current study was to contribute to this literature by exploring the relationship between mental illness and work. I did this by looking at a population of successful individuals with an SMI to better understand the challenges they faced and how they managed these challenges and barriers and succeed where many have not. Using published autobiographies of successful individuals, I explored the personal lived experiences of these “outliers” (i.e., those on the right side of the bell curve) who have succeeded and thrived while many have not. This approach was best illustrated in by Malcolm Gladwell in his best-selling book Outliers (2011). The use of published autobiographies was an effective and defensible methodology for this study as these books were easily accessible and provided a source 6 of data on a population that is considered vulnerable due to their severe mental illnesses. Further, these monographs provided a rich source of detailed information to explore the important relationship between having an SMI and success despite challenges. Research Questions I investigated the following questions in this study: (1) How have these individuals successfully navigated their professional lives with the disorder? (2) Is there any connections between their choice of education and profession and their mental illness? (3) How did stigma influence their journeys and how were they able to overcome the effects of this stigma to succeed? (4) Why did they decide to write a public account of their lives? Using a qualitative content analysis of the 13 books, I found that those with the most severe-mental illnesses (i.e., schizophrenia, bipolar, and major depressive disorder) attained educational and professional heights that relatively few achieve in our society. Most of the sample struggled with serious symptoms during their schooling and work and, despite this, beat the odds. The majority of the sample were employed as academics or health care professionals. These jobs and the industries they are located in provided them with sufficient flexibility that they could take time off or work in private when needed and not attract the attention of employers and colleagues. This flexibility was a large contributing factor to their success. Academia was the route for success in most of these individuals. Success was attributed to several factors including a dogged determinism, use coping styles that facilitated academic success such as studying extensively, refusing to give up, and having at least one understanding and supportive individual in their lives. 7 Many chose academic topics and careers that were related to their illnesses. Indeed, a number became experts in fields linked to their own individual illnesses, others approached their chosen fields such as law focusing or library sciences focusing on some aspect of mental illness, while others became psychiatrists working with clients with similar disorders as their own. A number reported that having a mental disorder facilitated rather than hindered their professional abilities. For the vast majority, facing stigma and discrimination was a part of their journey. For all these individuals, the act of writing about their experiences and publishing their stories was their way to lessen the stigma by “coming out” publicly and demonstrating to others that having an SMI does not mean having to lower one’s expectations and goals. Each individual monograph is a testament to their resiliency of these individuals, and sheds a much-needed light on a very stigmatized population. I believe that by bringing 13 of these unique experiences together in this study, I was able to undercover key themes and patterns that contribute to the existing literature and, in doing so, play a small part in lessening the stigma. This thesis is broken down into five chapters. In the next chapter, I contextualize this study within the larger body of literature. In Chapter 3, I present the methodology, provide a rational for my approach, and describer data collection process. The results of the study are discussed in Chapter 4. Chapter 5 concludes the thesis by addressing the key findings to the research questions, the limitations of the study as well as potential future research. 8 Chapter 2: Literature Review A mental illness, by definition, has a criterion of impaired level of functioning in some area of life including work or interpersonal relations (APA, 2013). Scholars have found that mental illness also affects employment rates, job tenure, income levels, and type of jobs people do (Burns et al., 2007; Carmona, Gomez-Benito, Huedo-Medina, & Rojo, 2017; Cook, 2006; Kirsh, 2000; Mechanic, Builder, & McAlpine, 2002; Williams, Fossey, Corbière, Paluch, & Harvey, 2016). This literature review will address what is known about the barriers to employment for those with mental illness as well as factors in organizations that impact symptoms of mental illness. In describing this literature, I organized the studies in terms the type of factors emphasized as affecting work outcomes. Much of the literature that exists have focused on individual-level factors (e.g., nature of illness, cognitive function, and educational attainment) and to a more limited extent, structural factors (e.g., organizational and educational rules and policies, and public legislation) have been addressed. The role of stigma is a key factor in understanding some of the challenges this population experienced in all aspects of their lives including in terms of employment. Finally, I explored the relatively small body of work that has focused on the experiences of those with serious mental illnesses. Contributing Factors to Lower Employment Rates for Those with Mental Illness Individual level factors. Studies have explored the effects of individual-level factors on employment. The nature and severity of mental illness including the symptoms, and related cognitive functioning have all been found to affect the likelihood of a person working. Luciano and Meara (2014) used a national sample of Americans (n 9 = 77,326) to compare employment rates of individuals who had no mental illness, to those with mild, moderate and serious mental illness and found that the more serious the mental illness the less likely individuals were to work: employment rates for those with no mental illness was 75.9%, compared to the mild group (68.8%), moderate (62.7%) and severe group (62.7%) and the severe group (54.5%). McGurk and Mueser (2003) studied 3 groups of clients who had received treatment at a local hospital: (a) those who were not working (n = 21), (b) those who were working in a supported environment (n = 17), and (c) those who were employed in a competitive environment for at least a year (n = 23). The researchers conducted a battery of neurocognitive tests and administered the Positive and Negative Syndrome Scale to assess cognitive functioning and symptomatology respectively. They found that those with worse cognitive functioning and symptoms were less likely to be employed while those with better functioning tended to be more likely to be employed in competitive work. Dickerson, Boronow, Stallings, Origoni, Cole, and Yolken (2004) studied 117 individuals with bipolar disorder to explore the impact of cognitive functioning, severity of symptoms, demographic factors and variables related to the course of illness including hospitalizations. Comparing 3 groups of individuals (i.e., not employed, those who worked part-time or volunteered, and those who worked full-time), they found that competitive employment was significantly associated with better cognitive performance, particularly verbal memory, and lower severity of symptoms. Interestingly, the study did not find a link between age on onset and history of psychosis and employment. Results from studies looking at the nature of the illness and its symptoms have been equivocal. Dolce and Waynor (2018) did not find a link between psychiatric 10 symptoms and employment in their study. Metcalfe, Drake and Bond (2017) also failed to find a statistically significant connection between severity of symptoms and employment in their sample of 2,055 Social Security Disability Insurance beneficiaries with schizophrenia or affective disorders. As they stated “factors commonly considered barriers to employment, such as diagnosis, substance use, hospitalization history, and misconceptions about disability benefits, often have little or no impact on competitive employment outcomes” (2017, p. 345). They did find those with fewer physical health problems were more likely to be employed. Educational attainment. Many studies have found educational attainment to be one of the best predictors of employment for those with a mental illness (Ellison, Russinova, Lyass, & Rogers, 2008; Luciano & Meara, 2014; Mechanic, Builder, & McAlpine, 2002). Ellison et al. (2008) surveyed a sample of 347 individuals with an SMI and found that higher levels education were statistically significant in predicting successful employment. Mechanic et al. (2002) used data from several national American datasets containing information on disability and employment and they found that education was the most significant variable linked to being employed in this population. There is relatively little literature exploring the influence of mental illness on students and their educational experiences despite the estimated 20% of U.S. and Canadian students who have a mental illness (Markoulasis & Kirsh, 2013). Kitzrow (2003) noted that this percentage is likely to increase as more people attend a postsecondary institution. The work that does exists has explored how access to and success in university or college is dependent on a number of variables including the nature of the individual’s 11 illness and symptoms, perceived and real stigma, support or lack thereof, and the existence of support for the individual (Kirsh et al., 2015; Martin, 2010; Megivern, Pellerito, & Mowbray, 2003). Kirsh et al. (2015) found that the person-environmental fit was a key consideration in educational success for those with a mental illness. In a study of 19 university students, the authors found that a combination of factors helped explain their success. At the individual level, they found that students who had developed good coping mechanisms (e.g., distraction, engaging in other activities) were better able to reframe their mental illness as an opportunity for growth. Further, those who had more control over their setting (such as changing the type and number of courses they took) were more apt to be successful. Kirsh et al. (2015) also found that successful students had a supportive academic environment. Social support in the form of friends or staff that understood their illness and the challenges they were facing, was important in the success of these students. Finally, the structure of the institution made a difference: Those students who were provided with accommodations, access to supports, and other services, did better than those who were lacking such supports. Megivern, Pellerito, and Mowbray (2003) interviewed 35 people with psychiatric disabilities who had attended and withdrawn from college at least one time in order to understand the challenges they faced. The individuals in the sample had withdrawn on average 3 times during their school years. The results indicated that the main reasons for the withdrawals centered on the nature and intensity of symptoms of their illness or hospitalizations. Some symptoms cited included hallucinations, mania, paranoia, lack of concentration, anxiety, and an inability to leave their homes to attend school. Those with 12 more hospitalizations were more likely to withdraw from school. Decreased self-efficacy such as fears of not being able to succeed and lack of motivation were also seen as contributing factors. Despite these symptoms and multiple withdrawals from school, the authors also found that some students did these return and completed school. Theses individuals reported that support from teachers and/or counselors played an important role. They also believed that their success was attributable to their persistence and not giving up when faced with challenges. Martin (2010) surveyed university students who had a mental illness about their experiences and found that most students did not disclose their illness primarily due to their fear of potential stigma. Indeed, these students went to considerable lengths to hide their illnesses. Students feared discrimination in school and potentially in their future careers as well as feared being judged if they disclosed. Martin (2010) found that the students who did not disclose their illnesses experiences symptoms that had significant effects on their ability to do well at school: These students identified physical difficulties (e.g., being tired, and/or sleep difficulties); psychological difficulties (e.g., poor concentration, inability to cope with stress, and/or feelings of worthlessness); and social difficulties (e.g., social anxiety, panic attacks, or inability to go to class). This means that they rather do poorly in school than have to disclose their mental illness and potential face “discrimination and disadvantage” arising from the stigma of mental illness” (p. 272). Structural Factors: Work Organizational and supervisor attitudes. Studies have demonstrated that the attitudes of supervisors, co-workers, and that of the overall organization were linked with 13 the experiences of individuals with an SMI. Kirsh (2000), for example, studied 36 individuals with a mental illness to assess the effects of four variables on employment outcome: (a) empowerment, (b) social support, (c) organizational culture/climate, and, (d) person-fit environment. Using a questionnaire, Kirsh (2000) divided the sample into two groups: those with jobs and those who had recently left their jobs. She concluded that overall organizational climate and culture, including the attitudes of leaders affected the work experiences of employees and influenced their experience of work: Those with more supportive environments and jobs that fit them better were more likely to be working. Cavanagh, Bartram, Meacham, Bigby, Oakman, and Fossey (2017) found that supportive and non-prejudicial managers and employers who believed that employees could perform well and be productive was linked with better work outcomes for this population. Shields (2006) found those who had low levels of support from their coworkers and supervisors had higher rates of depression in a sample of employed Canadian adults. McTernan, Dollard, and LaMontagne (2013) conducted a telephone survey of 2,070 individuals with depression and a 1-year follow-up. They found workplace bullying was statistically correlated with higher levels job strain, rates of absenteeism and presenteeism (i.e., being at work but not as productive). Bullying was measured using a single question while job strain was measured using the Job Content Questionnaire that asked questions about job demand and control over work. The authors concluded that there is a need to change organizational climate to eliminate the negative effects of these factors on individuals with mental illnesses. They stated leaders could promote healthier work 14 environments and outcomes for their staff by having zero tolerance for harassment and discrimination around the issue of mental health. Harassment and discrimination in the workplace has been found to increase suicidal ideations amongst male and female physicians when their work environments allow for such behaviours (Frank & Dingle, 1999; Fridner et al., 2009, 2011). These studies further found that support at work from either colleagues or staff was beneficial and lowered suicidal ideations. The studies did not find that long work hours per se were linked to suicidal ideation but long hours in combination with high demand and minimal vacation time was (Frank & Dingle, 1999; Fridner et al., 2009, 2011). Job factors. Elements of the job such as control over work hours and other forms of flexibility have been linked to better work outcomes for individuals with mental illness (Cotti, Haley, & Miller, 2017; Fridner et al., 2009, 201l; Villottii, Corbière, Fossey, Fraccaroli, Lecomte, & Harvey, 2017). Cotti et al. (2017) studied 1,667 respondents from the National Survey of Changing Workforce to explore the links between workplace flexibility and stress on individuals. The data analysis found that those who had flexible work arrangements that allowed them to take time off during their day for personal reasons, to work alternate work schedules such as compressed work weeks, and the freedom to decided what they did on the job had better employment outcomes. Fridner et al. (2009, 2011) found that physicians who have more control their work (i.e., scheduling their work hours and amount of work) were less likely to exhibit suicidal ideation. Villotti et al. (2017) surveyed 90 employees with a mental illness in Australia, Canada, and Italy and found that longer tenure was linked to access to accommodations at work, and having flexibility in terms of their schedule 15 Public Policy and Programs From a macroscopic lens, studies have suggested that public policies and programs can affect the employment experiences people with mental illness in various ways. Some policies, programs, and legislation such as those focusing on human rights, can serve to protect employees, while programs such as supported work and workplace policies on mental health can help promote employment and retention (Ball, Monaco, Schmeling, Schwartz, & Blanck, 2005; Cockburn et al., 2006; Corrigan, Markowitz, & Watson, 2004). Despite these findings, Little, Henderson, Brohan, and Thornicroft (2011) found that few organizations have formal mental health policies. In their study of 500 British employers, they found that only one third had such policies. Studies in different countries have found similar results: In the U.S., only 15% of employers have explicit policy for hiring those with mental illness (Ball et al., 2005). Cavanaugh et al.’s (2017) Australian study found that even when there were policies in place, they were not necessarily implemented. They found that some reasons for the lack of implementation including concerns about the cost of accommodations and limited understanding and training mental illness and how to support this population at work. Stuart (2006) found that that anti-discrimination policies in Canada have not protected workers because many employers still harbor prejudicial views regarding those with mental illness and the fear about the potential cost of accommodations results in a reluctance to hire these workers. As noted above, the concern over costs regarding accommodations and potential loss in productivity have limited the accessibility of those with mental illness to work. Along those same lines, I believe that the underlying profit-making ethos in Western capitalistic societies have contributed to treating people with mental illness as a liability 16 to productivity and profit-making. Indeed, academic articles such as Dewa and Hoch (2014) presented economic modelling of stigma programs to provide a labour market rationale for employer and health care providers to assist those with mental illness. They argued that their analyses “provide[d] information to help occupational health payers become prudent buyers in the mental health market place” (p. s34). Harder, Wagner, and Rash (2014) presented an economic argument to promote health workplace programs and policy. Assisted employment for those with an SMI. McDowell and Fossey’s (2015) review of accommodation programs in the workplace found that the most common in the form of job supports including employment strategies noted above, flexible schedules and work hours were the second most common, while modified training, supervision, and modified job duties were also common. These studies have focused mainly on entry-level jobs and lower wage jobs rather than those for professionals (Ellison, Russinova, Lyass, & Rogers, 2008). There is a large body of work that has explored strategies to assist individuals with SMIs access paid work and help them to remain working (Baldwin & Marcus, 2014; Bond et al., 2001; Burns et al., 2007). For example, Crowther, Marshall, Bond, and Huxley (2001) assessed two forms of support for those with severe mental illness and found that supported employment such as having a work coach that provides advice and problem-solving assistance, were more effectives in keeping a job than prevocational training (e.g., skills training and workshops). 17 Stigma There is an extant literature on the effects of stigma on individuals with mental illness (Baldwin & Marcus, 2007; Krupa, Kirsh, Cockburn, & Gewurtz, 2009; Lyons, Hopley, & Horrocks, 2009; Thornicroft, 2009; Thornicroft, Brohan, Kassam, & LewisHolmes, 2008). Studies have found that stigma contributes to lower income and unemployment (Markowitz, 1998). Several studies have found that employers are reluctant to hire people with mental illness because of the anticipated possibility of poor work performance and absenteeism due to the illness (Glozier, 1998; Houtenville & Kalargyrou, 2012; Manning & White, 1995; Stuart, 2006; Thornicroft, 2009). Stereotypes and stigma can run quite deep and has even been observed in a sample of Canadian psychiatrist and other mental health clinician whose job is to work with this population (Nordt, Rossler, & Lauber, 2006). Dabby, Tranulis, and Kirmayer (2015) found that psychiatrist held biases against those with mental health disorders that they did not have for those who had physical disorders. Wahl and Aroesty-Cohen (2010) found that many mental health professionals are reluctant to have people with mental disorders in their social and professional circles. Indeed, Hand and Tryseenaar (2006) have states that “there is little question that mental illness remains one of the most highly rejected status conditions in Western society” (p. 166) and this stigma has been directly linked to discrimination in many spheres of life including access to education and employment. The fear of stigmatization and discrimination has kept many individuals in the closet regarding their illness (Bos, Kanner, Muris, Jannsen, & Mayer, 2009; Brohan et al., 2012; Cook, 2006; Wahl, 1999). Brohan et al. (2012) conducted a systematic review of the literature published between 1990 and 2010, and found that fear of not being hired, 18 unfair treatment in the workplace, being subject to gossip, discrimination, stigma, and losing credibility in the eyes of others were reasons why employees did not disclose their mental illness. Teasdale and Deahl (as cited in Belkic & Savic, 2013) found that employees who needed to take time away from work due to their mental illness often provided a different reason for the leave to avoid the stigma. There is evidence that fear of disclosure is justified. Brohan et al. (2012) explored 25 studies on employer attitudes using scenarios and simulations and found that employers were less likely to interview or employ someone with a mental illness and more apt to hire someone with a physical disability. One important caveat is that those who have had prior positive experience with this population where more likely to hire workers with mental illness and less likely to hold negative stereotypes: A key reason is that they have witnessed the positive contributions these individuals can make in the workforce. Hand and Tryseemaar (2006) found that negative stereotypes of employees with mental disorders can be challenged with contradictory information that shows such individuals in a much more positive light. Kosyluk, Corrigan, and Landis (2014) found that exposure to individuals with mental illness is a better approach to addressing stigma than educational strategies. Jones (1998) noted that even reading about people with mental illness and their successes played a role in eliminating the stigma. Looking at “Success” Stories Fewer studies have examined those individuals with an SMI who have succeeded in getting and maintaining their jobs (Ellison, Russinova, Massaro, & Lyaass, 2005; Ellison, Russinova, Lyaass, & Rogers, 2008; Ellison, Russinova, McDonald-Wilson, & Lyass, 2003; Hammen, Gitlin, & Altshuler, 2000; Mechanic, Bilder, & McAlpine, 2002; 19 O’Day, Killeen, & Goldberg, 2006). Most of the studies used a quantitative approach to explore the enabling factors to success in the workplace. Mechanic et al. (2002) used data from several national American databases that collected information on disability and employment. They found that people with a mental illness were less likely to be employed than those without and those with an SMI were least likely to work. Of those with an SMI, they found that more than 1/3 of individuals were employed and many of those individuals had ‘high-status’ positions. Using regression analysis, they found that education was the most significant variable linked with employment of this population. Ellison, Russinova, Lyaass, and Roger (2008) explored the characteristics of a sample of 347 individuals with an SMI (defined as having a mental illness or a history of 1 psychiatric hospitalization or who had received disability benefits) who were working as managers and professionals in the U.S using a mail-in survey. In the study, the authors operationalized success using four different variables: (a) working full-time, (b) job tenure, (b) occupational rank, and (d) annual income. The main contribution of the study was to demonstrate that those with a serious mental illness can and do work in high paying, high ranking professions and can have long tenure in these jobs despite having ongoing symptoms of their SMIs. The data analysis also indicated that some factors were linked to one of these success proxies but few correlated with more than one outcome. The most commonly factors linked to working part-time, having lower tenure, and having lower level jobs was receipt of disability benefits. Ellison, Russinova, Lyaass, and Roger (2008) suggest two possible reasons for these results: (a) receiving benefits may serve as a proxy for illness severity, and (b) disability benefits rules may discourage working. As they noted “their 20 receipt (of disability benefits) may bring into play the disincentives inherent in such benefits” (2008, p. 186). Full-time employment, another measure of success, was also linked statistically to individuals who had learned to manage their disorders. Educational attainment was significant for occupational rank, and gender was linked to income and occupational rank (men were more likely to earn more and have higher ranked occupations). The ability for individuals to solve problem, not working in mental health, human service or helping fields, and having more social support were linked to higher occupational rank. Interestingly, longer job tenure was more likely for older individuals who reported having more stressful jobs, who did not place importance on professional growth and development, who had less control over their work, and were not centered on the organizational culture. They found that the clinical characteristics of the individuals’ illnesses were not significantly linked to employment outcomes and that few coping mechanisms were linked. Further not caring about the culture or values of the organization they worked for was linked to higher occupational status. The authors suggest that it is possible that this outcome reflects “more flexibility in adjusting to their work environment” but that more research is necessary to fully under this link and others in the study (Ellison et al., 2008, p. 188). Ellison, Russinova, Massaro, and Lyass (2005) focused on the 59 individuals with schizophrenia (12% of the 347 individuals with an SMI) and found that 65% percent were working full-time, 37% were managers and minor professionals, 27% were technician and semi-professionals, and 49% had college or graduate degrees. These authors found that the more successful participants were better able to control their 21 symptoms and believed that it was their own drive to succeed or their will-power that were important in their success. A small minority (14%) received modifications or accommodations to their jobs. Ellison et al. (2005) also explored how those individuals with schizophrenia who “achieved mid-and upper level careers” had succeeded professionally (p. 123). They concluded that the following factors were linked to success: (a) learning to manage their condition, (b) having a drive to success, (c) having access to work modifications and, (d) had accommodations were more successful. Ellison, Russinova, McDonald-Wilson, and Lyass (2003) explored disclosure at the workplace and the impact of this disclosure on the individual. The study found that disclosure was more likely to occur when individuals were forced to do so, presumably due to a need for accommodation or a recurrence of medical problems. Those least likely to disclose were those in higher levels jobs and had fewer on-going symptoms, and had higher levels of education and training. O’Day, Killeen, and Goldberg (2006) took a qualitative approach in studying those employed individuals with an SMI. Of the 30 individuals interviewed, 20 were employed as in “white collar” or professional jobs. The authors found a majority of their sample had plans to advance their careers while the rest of the sample wanted to keep their current jobs or one similar to it. They further found that those who were successful in their jobs, reported having a strong work ethic and had pride in the work they did. Another important factor was that those who were successful, were able to find work that suited their needs. Some studies such as that of Jones’ (2015) exploration of “high functioning” health and legal professionals briefly described some notable individuals. His stated goal was to 22 shed light on mental illness in medical and legal spheres and demonstrate that success was possible for those with schizophrenia, bipolar, major depressive disorder, and borderline personality disorder. For each of these disorders, he briefly described the biography of these individuals using several paragraphs for each. Some of the individuals he mentioned are included this study (i.e., Jamison, 2011; Jones, 2011; Saks, 2007), while the others come from various sources including personal communications, biographies, or short biographical accounts such as articles. He focused on describing the illnesses, their academic and professional accomplishments, and the stigma they faced. His account did not explain why or how people succeeded but it did shed light on the fact that those with SMIs have succeeded despite the odds. There have been first person accounts of successful individuals living with a serious mental illness in scholarly journals and in the popular press, but these tended to be quite short and were largely descriptive rather than analytical (e.g., Beattie, 2017; Jones, 1998; Stephanidis, 2006). One example is Beattie (2017), a 50-year-old lawyer wrote a piece for the newspaper, The Globe and Mail, she briefly described being diagnosed with bipolar disorder at age 35 following a psychotic break. She noted that she feared “coming out” to her employer regarding her illness as she feared it might jeopardize her career. Jones (1998) published a piece in the law journal, The Lancet, where he discussed the prevalence of mental illness in the legal profession and identified himself as a “high functioning” professional with bipolar disorder. Stephanidis, née Hawkes, whose autobiography is one of the stories in this thesis, wrote a brief piece for the section called first person accounts in the journal Schizophrenia Review. As the name implies, this is a space that provides individual to 23 briefly tell their stories. In her story, Stephanidis (2006) discussed her hallucinations and delusions that lead to her hospitalization and diagnosis. She identified herself as a graduate student in neuroscience and explored the fact that her scientist-self understood her illness but that her experiences as a person with schizophrenia made it difficult for her not to believe the hallucinations and delusions. She concluded that with medication compliance she was functional. Summary The literature found that those who had a mental illness were more likely to be unemployed and if working tended to have lower paying, lower status jobs, and had higher turnover. A number of factors at the individual, interpersonal, and structural levels have been found to influence an individual’s experience at work. At the individual level, the nature and severity of the illness, symptoms, and related cognitive functions played an important role in whether an individual worked and had a positive experience doing so. Educational attainment was found to be the most important variable in determining whether someone with a mental illness was employed. The research has found access to and success in post-secondary education is affected by the nature and type of mental illness the student had. The structure of the educational institutions in terms of access to accommodations, supportive administrators and faculty were important determinants in success at school. In the workplace, studies found that flexibility of the job, culture and climate of the organization including stigma and discrimination, employer and co-worker attitudes toward mental illness all affected whether the individual succeeded at work. The 24 individual’s ability to use coping mechanisms at work to mitigate the impact of having an SMI and to persist in the face of challenges also contributed to their success. Stigma was found to permeate society, schooling, work, and interpersonal interactions, which affected individuals in many ways. For example, employers have been found to be less willing to employ those with a mental illness, supervisors and coworkers have bullied and discriminated against those with an SMI. Countries have developed any discrimination legislation to minimize these outcomes and provide access to accommodations at school and at work for these individuals. For many people, fear of stigma and discrimination have stopped many people from disclosing their illnesses and thus not accessing accommodations that could help them. Despite the challenges people with an SMI have in navigating school and work, some have managed to succeed in employment. The literature on this population is relatively small but have played a key role in creating awareness of the possibility to success despite common beliefs that an SMI limits success in the competitive work world. These studies have found a number of factors linked to success but the findings are equivocal including severity of illness, control over their symptoms, educational level, and a strong will-power to success. This literature has shed light on an important set of factors at many levels that affect people’s experiences of having an SMI and succeeding in school and work. These factors are complex and interrelated and few studies have looked at how they interplay within a particular individual’s life course and whether there are shared characteristics of those who have done extremely well despite having an SMI. 25 By using published autobiographical monographs, this thesis will add to this body work by detailing, from the individual’s perspectives, how they successfully navigated work with a serious mental illness. For this group of individuals, severity of illness and symptoms did not seem to be a key determinant of their success. What was found to be central to their journey was the determination to succeed despite the illness and, in a number of instances, how they used their illness to succeed. This sample used the educational route to achieve success and for many in this group, success was facilitated by using studying as a coping mechanism. Spending enormous amounts to time studying occupied them, gave them structure, and provided a sense of identity and pride that they did not find in other areas of their lives. Many entered fields where they found their illnesses enabled them to be more empathetic to their patients or to research, publish, and teach about mental illness from a unique vantage point. 26 Chapter 3: Research Design Any research study requires the use of data to answer one or more research question(s) and uses some type of methodology. Decisions about what approach to use are based on the nature of the problems explored. Research design has generally been divided into quantitative, qualitative, and mixed-methods branches. Quantitative methods stress numbers, large samples, and statistical analysis, while qualitative methods address words, small samples, and interpretation. Between these two extremes, mixed methods represents a blend of both approaches to varying degrees (Creswell, 2014). The three approaches provide strategies and tools to enable the researcher to find answers. The decision regarding which approach to use centres on what and who is being studied and the nature of the data. As the subject matter of this thesis was the lived experiences of individuals who have been successful in navigating the intersection of work, education, and mental illness as written in their autobiographies, an approach that offered the ability to read and interpret how the complex interaction of individual, interpersonal, and structural factors have led to their success was required. Using personal written accounts of 13 individuals’ lives, I believe that the richness of this journey each individual experienced can be particularly informative as would be an analysis exploring any possible themes or commonalities within this group. Given this focus on words and personal experiences, and interpretation, I used a qualitative approach. As a field of inquiry, qualitative research is used in a broad spectrum of disciplines and has developed many approaches including ethnography, case studies, narrative, content analysis, and interviews to name a few (Creswell, 2014). Each format offers the 27 researcher a way to conduct research that can yield very useful answers. There is no one best format, rather each offers a different way of collective and analyzing data. My approach for this study was to use qualitative content analysis as it allowed me to analyses the written words of my authors to better understand, from their perspectives, how they have negotiated the intersection between work and mental illness. Qualitative content analysis (QCA) is an unobtrusive research tool that allows the researcher to analyze texts to identify themes or commonalities between different texts. It is a multi-step process that requires reflexive reading of the texts in question in order to identify and code relevant material. Saldaña (2013) defines a code in the following way: “A code in qualitative inquiry is most often a word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data” (p. 3). What material is coded depends on the research interest of the study. There is no specific way of approaching coding agreed upon in the literature, but Saldaña (2013) provided some suggestions of the different stages that can be used. He states that once the data have been identified and put in written format, the first stage, pre-coding, can be completed. This stage consists of reading the texts and using some form of notation to highlight passages in the text that seem relevant. This first iteration allows the researcher to begin to see patterns. Saldaña (2013) is careful to note that this also includes making note of “idiosyncrasies” across texts as well as similarities. In this study, my first step was to read the 13 autobiographies. As I was reading, I underlined any passage that seemed pertinent (e.g., comments about their illness, experiences of work, education, and 28 stigma). In doing so, I began to see some consistencies across these books as well as some unique elements to each story. The first cycle coding can focus on one or more methods of coding. One method that can be used in almost all qualitative studies is “in Vivo Coding” (Saldaña, 2013). This approach uses verbatim passages from the text as it is written by the author as units of code. This approach allows the voice of the participant to remain true rather than being filtered by the researcher (Saldaña, 2013). After the initial reading of the autobiographies, I then went back to the books and wrote down verbatim the text I had underlined and/or starred. At this point, I made initial notes in the margins regarding potential themes based on the literature review (e.g., individual factors, interpersonal factors, and structural factors) such as “symptoms”, “family support”, or “education.” I then transcribed these written onto a Word file. During this transcription I returned back to the texts and explored some themes that emerged in other texts that I may have overlooked. For example, I began to notice that the use of studying as a coping strategy reoccurred in several books, and I re-read the others books to explore of this theme was present. Second cycle coding refers to “reorganizing and reanalyzing data coded through First Cycle methods” (Saldaña, 2013, p. 207). In this stage, the goal is to identify themes in the texts. Finally, the subsequent cycle(s) can be called the ‘focussing’ where the researcher can simplify the data to key themes that can help the researcher to prioritize themes or to organize them in a meaningful order (Saldaña, 2013). It is at the end of this stage that the researcher can begin writing their findings. In this study, I used the 13 Word files I had created along with the texts to highlight some of the themes I found. 29 Using highlighters of different colours I first divided them into broad themes (e.g., illness, education, employment, stigma). I organized each file along these broad themes. I returned to the texts to ensure the transcription was accurate and to see if there was additional material in the texts pertinent to these themes. During several iterations, I refined the themes into smaller ones such as subdividing the theme of “illness” into categories including age of onset, symptoms, age of diagnosis, hospitalization(s), and medication. At this point, I cut and pasted the themes for each individual onto a single file and then began organizing the data. Following this, I used this material to answer the theoretical questions. Reliability and Validity of the Data Collection and Analysis One key purpose of any research project was to ensure that the data collection and analysis was done in a manner that allows the readers to assess its reliability and validity. Reliability refers to the idea that the results are consistent while validity refers to the accuracy of the results (Creswell, 2014). Qualitative reliability can be achieved in a number of ways including: (1) ensuring that the data analysis is conducted in a systematic manner, (2) that the steps of the analysis are documented, (3) that any possible errors in transcribing are fixed, (4) coding should constantly be compared to the data, and (5) cross-checking the codes with other, similar data (Gibbs, as cited in Creswell, 2014). Each of these steps were followed in the study as describe earlier. Further, the public nature and easy access of my data (i.e., the published books) makes it very easy for the reader to access the original source and thus assess for themselves whether my interpretations are faithful to the authors. 30 Creswell (2014) identified different strategies to ensuring that the results are ‘accurate.’ One approach is to “use a rich description to convey the findings” (p. 202). Providing details such as quotations and context for these can help the reader assess the validity of the themes identified. Relatedly, identifying any “negative or discrepant information that runs counter to the themes” (p. 202) is also important. Both these approaches were employed in the data analysis. Creswell also recommended using an “external auditor” to review the project: By this Creswell means having an additional person not involved in the research process assess the research. In this case, I had a supervisor and a committee play this role. Additionally, the public nature of the data allows every reader that ability to review the analysis. Ethical Concerns and REB The University of Northern British Columbia (UNBC) requires all research that involves humans to be approved by its Research Ethics Board (REB) and follow strict procedures including being approached by its REB (UNBC, 2006). UNBC’s 2006 policy on research with humans outlines the following goals: 1. The safety, welfare and rights of participants are protected; 2. before beginning research, the amount and the kind of information communicated to participants is appropriate to ensure that informed consent will be obtained from participants; 3. participants are made aware that their participation is voluntary and that they have the right to withdraw from the research at any time; and 4. multi-centered research projects and research under other jurisdictions also receives appropriate ethical approval from those centres and jurisdictions. Ethics Boards are put in place to protect participants and as such tend to be cautious on researchers seeking to address ‘sensitive’ material. These issues, included experiences 31 of having a mental illness, can be difficult to get ethics approval for. A unique way to research this topic that eliminates this concern is to used publicly available published material. The data for this study came from published autobiographies, as such, the writers are presumed to have consented to be read publicly and used (as long as doing so does not violate copyright laws). Indeed, each author stated that their aim was to make the details of their illnesses and experience visible to address stigma. Given this, despite the sensitive nature, consent is presumed. Why Autobiographies? I want to briefly touch on the use of autobiographies or memoirs in research. This is an approach that has been successfully used in other studies (Connidis, 2012; O’Brien & Clark, 2010; Page & Keady, 2010; Young, 2009) to access data on the personal experiences of individuals in their own words. Power, Jackson, Weaver, Wilkes, and Carter (2012) noted that written autobiographies are a valuable resource to researchers as they allow them to understand what the individual believes to be the most salient and meaningful aspects of their experiences. The data from autobiographies provide a unique source to understand many types of issues including the topic of mental illness in this study. There are practical and theoretical reasons for my choice. From a practical perspective, severe mental illness is viewed as a sensitive topic for university ethics boards and interviewing individuals for a study at the masters’ level would be fraught with many hurdles. Further these data sources are also “relatively inexpensive and little effort is required to collect a sample” (Power, Jackson, Weaver, Wilkes, & Carter, 2012, p. 40). Autobiographies tend to be written by fairly well educated and literate individuals and though they are not 32 representative of the general population of those with SMIs which is the target population for this study. Some might argue that published manuscripts may represent a censored and idealized version of their experiences. Marching (as cited Power, Jackson, Weaver, Wilkes, & Carter, 2012) suggested that the public nature of the autobiography may make it more likely that the author will be more likely to censor their stories because these are not anonymous accounts as a research interview would be. It is not possible to assess which type of account is more or less likely to be “accurate,” but Connidis (2012) notes, that interviews and memoirs can both be viewed as “authentic stories” told by the individual that “may or may not be more or less factual in details” (p. 102). Power, Jackson, Weaver, Wilkes, and Carter (2012) note that one of the advantages of this approach is that it can highlight areas of the experience that existing research had not recognized or considered. Another advantage, is that autobiographies offer the writer the space to fully write their stories (most of the books range from 200 to 300 pages) taking the time to research and recall the events and feelings (often written over several years) that gives the writer the opportunity to include the material they feel pertinent. All the authors in this study have explored the intersection of their lives, education, career, and mental illness at length in the production of their manuscripts. In some cases, the authors have published several documents on this topic where this is the case, I have made use of the material to thicken their stories. Further, several of the authors have drawn from collateral data including recollections of people and professionals around them, their medical records, and other data to help confirm ‘facts’ from their lives. 33 Data The data for this study came from 13 published autobiographies of individuals who have achieved academic and professional success and have a serious mental illness. The criteria for inclusion in this study are as follows: (1) That the individuals have a published account of both their mental illness and their journey through school and work and the intersection of these two. That is, there needed to be sufficient detail to enable me to answer one or more of the questions addressed in this study; (2) That the individuals have achieved a high level of academic and professional success. To be included, they needed at least an undergraduate degree as well as having worked in a profession generally recognized as high level (e.g., lawyer, journalist. politician, doctor); (3) That the individual has or had a ‘severe mental illness’ as diagnosed in the Diagnostic and Statistical Manual, version 5 (DSM-5) and that this illness “resulted in serious functional impairment, which substantially interferes with or limits one or more major life activities such as maintaining interpersonal relationships, activities of daily living, self-care, employment, and recreation” (SAMHSA, 2016). For the purpose of this project the illnesses that meet these criteria are schizophrenia, bipolar disorder, and major depressive disorder. The autobiographies were selected based on their eligibility based on the three criteria outlined above. I owned four of the autobiographies already (i.e., Hawkes, Jamison, Jones, Saks) as I have had a lifelong interest in autobiographies of individuals who defy the odds. Indeed, my interest in this project originated with these books and my desire to conduct my research on destigmatizing mental illness by highlighting success stories. I began my search for additional autobiographies through web-based search tools on scholarly databases (e.g., Academic Search Complete, SocINDEX, PsychINFO), as well as websites that provide lists of memoirs or autobiographies on serious mental illnesses and well as book selling sites such as Amazon. I searched for the word 34 autobiography, memoir, mental illness, serious mental illness, schizophrenia, bipolar, or major depressive disorder. I also looked at any references of autobiographies mentioned in the literature or by the authors I found for this study. I found many books on the topic and reviewed 35 full-length books. Many of these books failed to meet one or more of the criteria established in this study. Thirteen of these books met the criteria and were available for purchase. Using these books as data, I was able to explore the many themes as well as unique qualities. From this information, I was able to provide richness to the various factors affecting success or lack thereof identified in the literature and observe the interconnection of these individuals, interpersonal, and structural elements as they played out in the lives of the 13 individuals. I also found elements of coping unique to this population such as studying, learning about their own illnesses and contributing to the body of work in their fields, as well as using their illnesses as a positive in their chosen fields. The individuals in the sample are sufficiently varied in occupation to indicate that choice or work and industry can affect their ability to manage their illness while working and succeed. Summary This thesis analyzed 13 autobiographies of individuals who have an SMI, achieved professional and academic success, and provided a narrative with sufficient information to enable the research questions to be answered. The research design used was qualitative as it allowed me to analyze texts to identify themes between the different texts. To ensure the study adhered to ethical considerations I ensured that the rules of the university’s REB policies were adhered to. As the data came from published public books 35 this step was not required as I studied the accounts of individuals who have chosen to make their experiences public by writing their own stories. Using published autobiographies offered a very detailed and rich account of the lives of each individual at a relatively low cost. These authors controlled their own narratives and were able to address all the factors they viewed as important rather than being limited by the researcher’s questions. To maximize reliability and validity of this study, I took steps to ensure that both these elements of quality were addressed. Some of the strategies I outlined earlier include using a systematic process to analyze the data and ensured that the analysis was true to the data by checking these data and my analysis at different steps in the process. Further, the public nature and easy access of my data (i.e., the published books) makes it very easy for the reader to access the original source and thus assess for themselves whether my interpretations are faithful to the data. I sought to ensure that my results were ‘accurate’ by using providing rich details such as quotations and context and identifying information that ran counter to the themes. In the following chapter, I provide the results of my content analysis of the autobiographies by describing the sample, discussing the key themes that emerged from the analysis, and answering the three theoretical questions posed in this thesis. 36 Chapter 4: Results and Discussion This study explored how a group of individuals have negotiated the journey through life with a serious mental illness (SMI) and managed to succeed both academically and professionally despite the odds. In the previous chapter, I presented data indicating that individuals with an SMI are significantly less likely to be employed, and if employed, are more likely to work at part-time jobs that are low paid and less secure. This study looked at how some individuals manage to thrive and succeed where most do not. I used published autobiographies of 13 individuals who described their journeys as my data. Using content analysis, I found common themes reflected in the journeys of these individuals in terms of how they what they believed were the reasons for their success, how they experienced stigma, and how their illness informed their choices of what they studied at school and the careers they chose. In this chapter I describe the participants in the study and explore the results of the content analysis. Participants The focus of this study was a very specific group of successful individuals with an SMI and as such, the sample is purposive rather than representative of the individuals who have an SMI. The sample comprises 9 women and 4 men born between the year 1946 and 1979 (see Table 1). Most of the respondents were born in the USA (n = 10), while 2 are from Canada and 1 is from the U.K. (see Appendix 1 for a summary of each individual’s story). 37 Table 1 Authors’ Year of Birth, Gender, Country of Birth and Disorder Author Disorder Cheney Year of Gender Country birth of birth 1959 Female USA Gask 1955 Female UK MDD Hawkes 1979 Female Canada Schizophrenia Jamison 1946 Female USA Bipolar Jiang 1972 Male USA Schizophrenia Jones 1953 Male USA Bipolar Kennedy 1967 Male USA Bipolar North 1954* Female USA Schizophrenia Saks 1956 Female USA Schizophrenia Simon 1976 Female USA Bipolar Thompson 1955 Female USA MDD Vonnegut 1947 Male USA Bipolar Wong 1957 Female Canada MDD Bipolar Note: * There is no reference to date of birth in the book nor on the internet. One online article I found refers to North as being 33 in 1987. Four of the individuals have a diagnosis of schizophrenia (i.e., Hawkes, Jiang, North, and Saks). Six have a diagnosis of bipolar (i.e., Cheney, Jamieson, Jones, Kennedy, Simon, and Vonnegut). The 3 remaining women have a diagnosis of major depressive disorder (MDD, i.e., Gask, Thompson, and Wong). 38 Table 2 Nature of Disorder in the Sample Compared to the Overall Population Disorder Frequency in sample Frequency in population* Schizophrenia 31% 1% Bipolar 46% 2% Major Depressive Disorder 23% 17% Note: * Source: Davey, 2014 The distribution of disorders in my sample is not representative of what is found in the population (see Table 2). Slightly more than 30% of this sample has a diagnosis of schizophrenia but this disorder is found in less than 1% of the population (Davey, 2014). Almost half of the individuals in this sample had a diagnosis of bipolar, yet it is found in less than 2% of the population. Major depressive disorder has been described as the most common form of mental illness in the general population (Harder, Wagner, & Rash, 2014) comprising 17% of the population (Davey, 2014). Seventeen percent of the sample have a diagnosis of MDD. The discordance between frequencies of these mental illnesses in the population compared to my sample is likely due to the fact that stories of individuals who have overcome the worst odds and achieved considerable success are more likely to be published given the media’s propensity for the unusual and sensational. I refer to the age of onset as the time when the individual believes their symptoms became apparent to them and age of diagnosis refers to when they received the current diagnosis. More than half the sample reported symptoms of the illness being present in childhood including auditory and visual hallucinations (see Table 3). Three of the 4 individuals with schizophrenia reported symptoms as children (i.e., Saks, North, 39 Table 3 Reported Age of Illness Onset of Illness and Age of Diagnosis of Illness Author Age of onset of illness Age of diagnosis Cheney Childhood 34 Gask Teenager 20s Hawkes Childhood 22 Jamison 17 28 Jiang 19 19 Jones Unclear 30 Kennedy Teenager Circa 21 North Childhood 1st year of university Saks Childhood 26 Thompson Childhood Circa 26 Simon Childhood 17 Vonnegut 24 24 Wong Adulthood 54 and Hawkes); Jiang is the exception reporting no symptoms until age 19 when he first entered the hospital. Cheney, Simon, Thompson, and Kennedy also reported the onset of their symptoms during childhood. Jones does not identify age of onset specifically but does note in his account that problems with social interaction, isolation, and physical ailments that are likely connected to stress and his personality began early in his life. For Jamison, Gask, and Vonnegut, their late teens and early 20s, was the point where their symptoms began. The only exception is Wong whose MDD emerged in late adulthood. As can be seen in Table 3, age on onset and age of diagnosis differ greatly for most individuals. The exceptions are Jiang and Wong, whose diagnoses were close to their age of onset. For the others, several reasons for the large difference in onset and diagnosis 40 among these individuals included the fact that some received one or more diagnoses before receiving their final one. Vonnegut, for example, initially received a diagnosis of schizophrenia, presumably due to the psychotic break he experienced in his early twenties: Over time, this diagnosis was changed to bipolar. Similarly, Hawkes and Saks were both first diagnosed with depression prior to their final diagnosis of schizophrenia presumably because they presented to the hospital following an attempted suicide, a classic symptom of depression. North was first diagnosed as schizoid personality disorder that was later changes to schizophrenia when she shared the fact that she heard voices with the doctor. Thompson was diagnosed with different personality disorders (i.e., hysterical, narcissistic, and borderline) as well as schizophrenia at different points in her life. Looking at educational and professional attainment of the sample, all have at least one university degree and many have more than one (see Table 4). There is a narrow range of professions in the sample. Half of the sample work in academia, 6 are professors and one works in a lab as a neuroscientist. Three lawyers are academics, and one works in this field. Other professions include 2 journalists/writers, 1 politician,1 pediatrician, and a librarian. Many of these authors attended prestigious universities such as Harvard and Oxford, have worked on Wall Street, and have won multiple awards including two MacArthur ‘genius’ Fellowships, an Obie (the “Oscar” for theatre). It is interesting to note the concentration of individuals in academia. It is beyond the scope of this project to explore why this is the case but a few observations can be made: First, the nature of the data (i.e., extensive written narratives) presupposes an ability to, and an interest in, writing. Academics, journalists, lawyers, and librarians 41 Table 4 Level of Education, Employment, and Notable Achievements of Participants Name Cheney Education J.D. (law degree) Employment Lawyer Notable Achievements 2 published books 50+ articles published Gask Ph.D., M.D. Psychiatrist & Several textbooks, 180+ published Professor articles and book chapters Hawkes Master in Science Neuroscientist Academic publications Jamison PhD Clinical Psychologist & Professor Jiang Master in Librarian & Library Science Writer 50 books published Jones PhD. Lawyer & Professor Academic publications Kennedy Bachelor Degree Politician Former member of the U.S. House of Representatives 16 years North M.D. Psychiatrist & Professor 130+ academic articles Saks PhD. J.D. Professor McArthur “genius” Fellowship 5 published books Simon Bachelor Degree Theatre producer Obie award Thompson Master in Law Journalist & Writer Pulitzer Prize finalist Vonnegut M.D. Pediatrician Published articles and 2 books Wong M.J. (Master in journalism) Journalist, Writer & Professor 6 published books McArthur ‘genius’ Fellowship. Numerous publications 42 arguably are predisposed to the written word and, one presumes, are more likely to want to put pen to paper. Second, those occupations provide a degree of flexibility and security that has proved advantageous for these individuals. the continuing employment of some of the individuals in this sample, most notably Jones. Results The literature addressed in an earlier chapter identified a number of factors that have been tied to high academic and employment achievement in this population. These variables range from those at the individual-level to more large-scale structural facilitators of success. In addition to finding evidence for those variables, the content analysis also identified others that have enabled to the individuals to successfully address the challenges they have faced in their journeys. I address these below divided into different sections based on their level of influence beginning with individual-level factors, . Individual Level Factors The literature has shown that the nature of the illness, the severity of the symptoms, the age of onset of the illness, the level of functioning of the individual, and their compliance to their treatment regimen are all factors that influence success both academically and employment-wise. Nature of illness. The sample used includes only individuals with the most serious mental illnesses and as such it is not possible to do a fulsome discussion of how the severity of a mental illness is linked to education and employment outcomes. That said, even within the three SMIs explored in this study, there are some differences in severity: Schizophrenia is often seen as more debilitating than bipolar and MDD. For example, in 43 this sample, half of the individuals with a diagnosis of schizophrenia were told that they would not have regular lives (i.e., Saks and North) as their illness was deemed too severe. It is interesting to note that Saks and North are significantly older than Hawkes and Jiang, the other two individuals with schizophrenia. These latter two do not report being given such a dire prognosis. Those with bipolar and MDD do not report such a prognosis given to them presumably because their illnesses were seen as less debilitating. The four individuals in the sample that have a diagnosis of schizophrenia have all done well in their chosen paths. Two, North and Saks, became doctors: North with an M.D. and Saks with a law degree and a Ph.D. Both were very ill during their schooling but nonetheless succeeded despite their reported hallucinations, delusions, and numerous hospitalizations. Career-wise, both North and Saks have had successful academic careers, extensive publications, and one, Saks, was given the McArthur ‘genius’ Fellowship for her body of work. Jiang and Hawkes both earned master’s degrees and have done well in their chosen careers, Hawkes as a researcher at UBC and Jiang as a librarian in New York; Both have many publications to their names. It important to recognize that these latter two individuals are relatively early in their careers and have several decades to be at the same stage of their careers as North and Saks. One presumes that time could affect both educational attainment and professional success for Jiang and Hawkes (as outlined in Table 4). The achievements of those with bipolar disorder are similarly impressive. Jamison, a clinical psychologist and professor, has authored hundreds of works and, like Saks, also won a McArthur “genius” Fellowship Vonnegut graduated from Harvard 44 Medical School and co-owns a private practice where he works as a pediatrician. Jones graduated near the top of his class in law school and became a full professor of law. Simon and Kennedy, two of the youngest individuals with bipolar in this sample, both received bachelor’s degrees and have successfully pursued non-academic fields. For Simon, arts and creative endeavours were her passion, while Kennedy followed his family’s legacy and went into politics. Simon received an Obie for her work while working for the theatre, and her research project on bipolar was made into an episode of an MTV documentary series. Kennedy faced challenges with his dual diagnosis most of his life and it did affect his schooling (dropping out of Georgetown in his first year) and he may have been elected because of his family name, but his re-elections and his campaigning for mental health reform is likely not exclusively the result of being born a Kennedy. Gask, Thompson, and Wong all have a diagnosis of MDD. For Gask and Thompson, their disorders have been present since their early years, affecting school and work in various ways, but did not interfere with their reaching the goals that they had set out for themselves educationally or professionally. Wong, on the other hand experienced her MDD later in life but nonetheless, the illness dramatically affected her professional life being on long term disability for two years and eventually being fired by her employer, ostensibly for talking about her experiences with the incident that precipitated the depression (discussed in detail below). Severity of symptoms. The literature suggests that the severity of symptoms is negatively correlated with professional and academic success. Because of the nature of the sample, these individuals reported very serious symptoms. The four individuals with 45 schizophrenia were able to continue studying while in college, despite multiple hospitalizations, experiencing hallucinations, delusions, and suicidal ideations. They all reported difficulty trying to focus, study, and attend classes, because of their symptoms, and some were forced to drop classes or a semester as a result of their illnesses. Hawkes, for example, spent four months in hospital during her last year of university and dropped all but one course. Saks also found herself hospitalized while studying for a master’s degree at Oxford. During this time, she was not well enough to do any academic work but the British system did not require course work or exams and assignments beyond meeting with a tutor and submitting a paper periodically. She was able to delay meetings with her tutor and then switched to a being required to only write a thesis at the end of the program. As a result, she did not have to drop out of school. She was not so lucky in law school where the hospital took it up itself to call the dean of students without her permission or knowledge to inform them that she “could not return to school that year, or possibly ever. In effect…(the hospital) withdrew me from law school (2007, p. 166). There were times when the symptoms were so acute that normal functioning was barely manageable for individuals. Hawkes, for example, spent many months hospitalized and capable of little productive work: “On the ward, nothingness filled my days while the Voices screamed at me. I would rock myself, cover my ears, hum in a monotone-anything to try and get them to quiet down” (2012, p. 87). Cheney and Jamison, both diagnosed with bipolar, reported depressions that were so severe and prolonged that they could not leave their homes for long periods of time, affecting both their grades and work. Cheney noted that she feel into a deep depression a 46 few weeks after starting law school and found it impossible to go to classes or even leave her room for a lengthy period of time. “I was sick with depression most of the first semester; … I came back to class a few weeks before the final” (2011, p. 163). She stayed in her room sleeping for days at a time, avoiding people, sneaking out at night when others were asleep to go to the bathroom and eat. She found food in garbage cans as nothing was open at that time of night. She was eating very little and losing weight and energy. She was found unconscious one night on her way back to her room and taken to the health centre: The doctors reported that she was severely malnourished and hospitalized her. During the years she was in law school, she would experience other bouts of depression. Unlike those with MDD or schizophrenia, those with bipolar reported that being able to tap into their ‘hypomania’ states has provided them with some increased productivity and performance to ‘offset’ the non-productive periods of productivity. Cheney described an episode in the following way: Alan (her boss) complimented me on the amount of work product I was generating. In fact, he was so impressed by my overall energy and drive, he even made me a second chair on the trial, an unheard-of honor for an associate at my level….I was an automaton at that point, at his beck and call twenty-four hours a day. I didn’t sleep; I didn’t eat; I just worked, in a single-minded frenzy. I was uber-lawyer: not only efficient, but nasty to boot. (2008, p. 211) Not all episodes of mania are “productive”; Jamison’s manias became more extreme and lead to periods where she “was wildly agitated, paranoid, and physically violent” which resulted in psychosis (2011, p. 81). At its worse, she described how she felt in the following manner: There was a point when I knew I was insane. My thoughts were so fast that I couldn’t remember the beginning of a sentence halfway through….Nothing once familiar to me was family. I wanted desperately to slow down but I could 47 not….At one point I was determined that if my mind-by which I made my living and whose stability I had assumed for so many years-did not stop racing and begin to work normally again, I would kill myself by jumping off a nearby twelve-story building. (2011, pp. 82-83) Jamison was not the only person with bipolar to experience a psychotic break, Jones also reported such an experience that lead to an admission to the hospital, and Cheney stated she was psychotic after receiving electroconvulsive therapy (ECT). Mania can have many negative consequences for individuals. Cheney reported large spending sprees and hypersexuality. She described a “nonstop twenty-four-hours-aday, eighteen-day odyssey” that she can only “piece together through the sales receipts” where she reported “spending an obscene amount of money” that depleted all of her savings account and resulted in the seduction of the husband of a friend of hers (2011, p. 158). Age of onset. There is some variance in terms of age of onset for this sample: Childhood (n = 6) and teenage years (n = 3) are the most commonly cited times. Only 2 reported adulthood as the age of onset; Vonnegut was 24 when he experienced his first psychotic break while Wong was in her fifties. Despite this range in onset, every individual, with the exception of Wong, experienced the SMI during their educational years and all reported that their SMI affected them professionally. There does not appear to be a pattern between age of onset and success in this sample. For example, North and Vonnegut both went to medical school and became doctors despite North’s illness beginning in childhood and Vonnegut’s at age of 24. Similarly, Thompson and Wong, both award-winning journalists with a master’s degree, have a similar pattern: For Thompson the age of onset was childhood and Wong’s was adulthood. 48 Frequency of illness. Every one of the individuals in this sample have had at least two episodes of their illness. The only exception is Wong who experience one bout of MDD in her 50s. For some, such as Cheney and Jamison, there were a number of depressive episodes linked to their bipolar disorder that affected their school and work performance over the years. Cheney noted that she missed a great deal of school from early childhood to law school. She similarly reported that there were lengthy absences from work where her productivity was limited. She reported being able to compensate for these periods when she was hypomanic. Jamison reported that her moods made it hard for her to adhere to the structure of attending classes on a regular basis and reported a very spotty grades record. She noted that the saving grace for her was the work she did in one of her professor’s labs. As Jamison (2011) states: University administrators do not consider the pronounced seasonal changes in behavior and abilities that are part and parcel of the lives of most manicdepressives. My undergraduate transcript, consequently, was riddled with failing grades and uncompleted classes, but my research papers, fortunately offset my often-dreary grades. My mercurial moods and recurrent, very black depression took a huge personal and academic tolls during those years. (p. 48) It was these moods swings that made her decided not to attend medical school as it was highly structured and class attendance required. She realized that she could not succeed in such a structured environment. Hospitalization. All individuals, with the exception of Wong, have had admissions to hospitals. There is a difference in terms of the number of times and length of admissions amongst this sample that appear to be linked to the type of illness in question. Those with schizophrenia, Hawkes, Saks, North, and Jiang, were hospitalized at least multiple times due to psychotic breaks, suicidality, and/or medication change. Hawkes, for example, was hospitalized 13 times since 2012, was given 8 different 49 antipsychotics and one antidepressant over the years to find one that was effective. All reported that their hospitalizations had negative effects on their education. For example, Saks’ first and second hospitalizations occurred when she was in England to study. Despite the doctors encouraging her to drop out, she refused: It took her twice as long to finish her degree but she did complete it. Shortly after starting law school she was hospitalized a third time. During this hospitalization, the hospital contacted the law school letting them know she was not returning to school, in effect withdrawing her from the program. She eventually was able to get readmitted and graduate. North, too, was withdrawn from her educational programs as a result of her hospitalization. While, she was in hospital, the administrators called the medical school to inform them of her diagnosis and prognosis that lead to her being withdrawn from her program. Like Saks above, the diagnosis of schizophrenia was equated with a life-long inability to function in society and medical school was not seen as feasible. For Hawkes and Jiang, who were in school several decades later, such disclosures did not occur, presumably due to privacy laws, and the university did not automatically dismiss them when these individuals presented doctors’ noted to explain their absences as this is now viewed as violating human rights legislation. Hawkes recounts talking to her supervisor after her first hospitalization telling her the reason she missed proctoring and exam was that she had been hospitalized. The professor was sympathetic and careful not to violate her privacy: “Oh! What hap- I mean, sorry, you don’t have to tell me what happened, if you don’t want to. But are you ok now?” (2011, p. 36). This reaction is a far cry from having the hospital call the school to inform them not only of the hospitalization but the diagnosis and prognosis was the case for North and Saks. 50 Interestingly some individuals avoided hospitalization in a psychiatric facility with the help of family and/or professionals. Simon (2002), for example, was cared for at home during her first psychotic break and Kennedy (2015) was placed in a nonpsychiatric ward to avoid the stigma presumably because of his public role. He was also given a full-time sobriety coach while in university to help him stay sober. The one place where numerous and lengthy hospitalizations seem to have affected individuals is in terms of the length of time it took them to complete they degrees. Half the sample reported some delays in educational completion due to their illnesses (i.e., Hawkes, Saks, Vonnegut, Jiang, North, and Kennedy). For example, Hawkes dropped most of her classes in her final year of undergraduate studies and took an extra year to graduate, while Jiang and Saks took longer to complete their masters’ degree than normal. Jones and Cheney both provide accounts of their hospitalizations but mention that they were able to keep their admissions quiet because they explained to others that they were there for medical reasons. Simon, Gask, and Thompson were also hospitalized at some point in their live but their accounts do not focus on these experiences or their or their outcomes. Medication compliance and symptoms. One of the biggest challenges individuals face is finding the right combination of medications. Doing so enabled them to control some of their most extreme symptoms while not producing too many debilitating side effects. As noted earlier, many of the individuals were initially diagnosed with different disorders and prescribe ineffective medication. Finding the right diagnosis was crucial to identifying the medications that worked for them (i.e., the right therapeutic dose and 51 manageable side effects). For some, this process took years. Hawkes, for example, reported trying 8 different anti-psychotics before she could find something that worked. Even when the right medication and dose is found, some resisted taking it. For example, Jamison (2011) found “it was difficult to give up the high flights of mind and mood. even though the depression that inevitably followed nearly cost me my life” (p. 91). She found the hypomania intoxicating and it was a time of great productivity: The medication took these periods away. She also noted she resisted using the lithium because it caused some very unpleasant side effects that affected her ability to read, comprehend, remember, and maintain an attention span for any length of time. As an academic, her mind was her bread and butter and she got very angry at the drug that was making her work impossible. The other side effects included nausea, vomiting, and possible lithium overdose. She noted that if her diet, stress, salt, exercise, or hormone levels changed, she had a strong reaction that started with trembling, lost control over muscles (i.e., ataxic), and her speech became slurred (2011, p. 93). Finally self-stigma also played a role in her non-compliance: She did not want to accept the idea that she had bipolar and taking the lithium was a form of admission of illness. She states: “I knew in my mind to be true [that she had bipolar]. Still, I flailed against the sentence I felt he (the psychiatrist) had handed to me” (2011, p. 87). Similarly, Cheney, who also has a diagnosis of bipolar and was prescribed lithium, experienced a similar adverse reaction while in public from the medication which resulting in being arrested when the police believed she was drunk. For Hawkes medication compliance was an ongoing battle because her delusions made her certain that there were rats in her pills and feared taking them. 52 Jiang developed akathisia with one of the medications he was taking making it hard for him to sit for long periods of time and blunted his cognitive abilities. Despite this, Jiang remained medication compliant and was able to succeed despite the side effects by studying “smarter not harder” as he found he could only study for short periods at a time (2010, p. 69). Saks too has challenges with medication. She was initially given the wrong type (antidepressants) and even when she was given antipsychotics she stopped taking them because she believed herself to be well: I stopped taking my medication again. I’m publishable, I’m not mentally ill at all-which means I don’t need to take medication for the mentally ill. I’m done with this (2007, p. 210). That was not the first nor the last time she stopped her medication and the outcome was the same each time; the psychosis came back. Her challenge was that she believed that the amount of medication she took was indicative of her health: The less she took the healthier she was. Another challenge for her was the appearance of tardive dyskinesia around her mouth and eyes as a result of her use of her antipsychotic. She has had many changes to her medication over the years but is more diligent in taking them. Social skills and interactions. These individuals find themselves with different levels of social skills. Some authors including Hawkes, Saks, Gask, Jones, Cheney, and Thompson, reported a number of interpersonal challenges that have affected their personal and work lives. Of those who have a diagnosis of schizophrenia, all but Jiang reported interpersonal challenges. Hawkes (2010) reported being a loner and not having many friendships: “I was asocial and did not care for relationships” (p. 31). For North, interacting with others was a challenge as she was more preoccupied with her inner 53 world. She would stare at people for long periods of time that put people off. As the illness progressed, she increasingly turned inwards and became catatonic. When she entered medical school, what friends she did have she lost contact with as she found she had not time to for anything but studying. Saks (2007) reported having a “painful lack of social skills” (p. 37). She described herself during her years in England as increasingly isolated, unkempt, “mutter(ing) and gesticulat(ing)” (p. 55) to herself walking down the street. Her lack of social skills would affect her journey in many ways. One example is when Saks applied for scholarship to attend Oxford for graduate studies. Her interviews were “disastrous”: She gave flippant answers to questions posed as her judgement “went sideways” (p. 49). Three individuals mentioned traits that are found in those with borderline personality disorder in their narratives that have affected their interpersonal interactions: Gask, Thompson, and Jones. Gask (2016) reported being easy to anger, overly sensitive to others’ comments, thin skinned, and has acknowledged having a number of borderline personality disorder traits. Thompson (1995) identified receiving diagnoses of borderline personality disorder, as well as, possible narcissistic and hysterical personality disorders; all explain her poor interpersonal relationships with others. She stated that her therapist believed her personality disorder caused her depression because her problem was her poor relationships with others. Jones (2011) reported negative experiences with others from the time he was a young boy: He reported being constantly bullied and having very difficult time interacting with others. He blamed his parents because of the way they cut his hair and what they made him wear. His social changes continued into adulthood. He described his 54 behaviour as being characterized with bursts of anger, getting very frustrated with others, irritable, brusque, impatient, demanding (p. 62). A colleague described him as “arrogant”, “standoffish”, and “overly sensitive to criticism” (p. 78). These qualities are similar to some of the trait for those who have diagnosis of borderline. His lack of interpersonal skills lost him relationships, potential job offers as he interviewed poorly, and jobs. He was fired because he could not get along with his colleagues and staff and lost a job offer when the secretaries at the firm told the employer that they would all quit if he were hired (they all knew him from a previous firm). Cheney (2008) reported not having many close relationships, in part due to her illness. Her attempts to hide her illness from others kept her from becoming too close to others and needing to sharing information about herself. In addition, she noted that her long periods of isolation when she is depressed are not conducive to getting and keeping friends. She reported that she has been able to put on a front that made her popular at school and at work. Part of this persona included avoiding people when her symptoms would betray her outwardly social and successful image. At the law firm she put on a role consisting of a “no nonsense pinstripe suit” and a “cold and chilly” attitude with a “twinkle in her eye” ( p. 23). Others, such as Kennedy, Jiang, Wong, Jamison, and Simon report relatively normal social interactions and having friends as well as relationships. These individuals are do not appear to have more ‘success’ than the other individuals in the study. Coping strategies and personal qualities. Everyone uses coping strategies to deal with life’s vagaries. There is a wide range of options that have been found to be to be 55 linked to success of this population while other strategies have caused challenges and negative consequences. Setting and pursuing goals. For some of the participants, establishing clear goals in their lives and doing what was necessary to achieve them was a theme in their success. Saks (2007) for example, was determined to complete her master’s degree when she was at Oxford but found that the structure of classes and even weekly paper writing was too great a challenge while her she was ill. She found a strategy, moving to a thesis stream where she only needed to hand in one paper at the end of the schooling, that was better suited to her needs. When she was an academic, she realized that she needed to publish on a regular basis and developed a strategy of producing more papers than she needed to publish in order to have a ‘stockpile’ to use when she would be too sick to write. She also noted that the very act of setting goals helped her: “The task of setting and achieving goals operated as a sort of adhesive; I needed it to hold myself together” (2007, p. 199). Jiang’s experiences as an undergraduate taught him that he needed to take a better strategy in graduate school if he was to avoid more psychotic breaks. He opted to study part-time and find ways to study smarter as his ability to study long hours had been compromised by some cognitive decline and the side effects of the medicine he was taking. In his ‘advice to prospective student’ he suggested the following: “Pace yourself, your first semester. Don’t take too many classes. Be realistic” (2010, p. 112). Drive and willpower. One theme that runs across most of these accounts of success is the overarching drive and willpower these individuals had in pursuing their goals regardless of the obstacles and challenges they encountered. North, Saks, Hawkes, and Jiang were all students when they were first hospitalized. Despite this, they pushed 56 hard to convince their doctors to allow them to still continue attending classes. For example, Saks was hospitalized several times while studying in England. The first time she signed herself out early to return to her studies. The second time, 8 months later, the doctors encouraged her to consider quitting school and Saks (2007) adamantly refused: I will remain enrolled at Oxford University. I will receive my degree in ancient philosophy. I will not return to the United States before I have completed my academic work (p. 80). Saks (2007) noted that she was surprised that the doctors agreed with her. She found a psychiatrist who believed that to get better she should “resume the work (she) loved” (p. 86). Despite being ill and not receiving the proper medication (they had diagnosed her with depression rather than schizophrenia) she worked at her studies continuously and persisted when she could not concentrate on her readings. Saks (2007) states that some days were so slow and difficult that it felt like I was carving rocks, and there were times I lost faith that I’d ever be happy with my work, or produce enough of it to finish.…But the daily routine kept forcing me to concentrate my mind and push the evil presence to the side. (p. 96) When Saks returned to law school in the U.S., she faced more opposition. She was informed that should would be able to return to school after her hospitalization only if passed an interview with the head of the psychiatric department. She states that she was able to do so after researching the psychiatrist’s publications, she was able to anticipate some of the questions, and memorized the appropriate answers. North had a similar story. She was hospitalized while in medical school she was deenrolled. Despite the support of her dean, the medical school would not accept her back and she had to find another medical school to accept her which she eventually did. Interestingly Jiang and Hawkes, the two younger individuals with schizophrenia did not face such opposition during or after their hospitalization. It is possible that this 57 reflects a change in perspective in the medical and educational institutions regarding what is possible for those with SMIs in the more than 20 years between the two groups. While she was in school, North stopped at nothing to do well. She reported living on coffee, caffeine pills, and not sleeping more than 4 hours at night. She identified herself as ‘obsessive’ and studying 18 hours a day. Jones noted that he was successful because of “sheer stubbornness and hard work” (2011, p. 31). Hawkes (2012) that she was determined to succeed despite her illness: I was determined not to let schizophrenia win over my life. It may hospitalize and demoralize me at times, may snatch away measures of my valued cognitive function…But I will not give it things it does not take. (p. 149) Vonnegut (2010) described having ‘awesome willpower” to accomplish his goals such as medical school and becoming a pediatrician (p. 183). Jiang (2010) described his drive as a positive can-do attitude and having a ‘driven spirit to succeed’ (p. 64). For Cheney (2008), the need to be the best drove her to work as much as she could to be successful. She reported working 24/7 at the law firm to be the best she could be. When she worked on cases she did not sleep or eat. She worked “in a single-minded frenzy” (p. 211). She even used her hypomania to be productive: She knew lack of sleep would trigger an episode and used this state to drive herself. The other factor that was apparent for all these individuals was their willpower and a belief that they could succeed despite their setbacks. Vonnegut for example, recognized that going to medical school was a long shot given his diagnosis of schizophrenia and not having taken science as an undergraduate (he majored in religion), but he applied nonetheless. He wrote: There is something about manic-depression [his later diagnosis] that, if you’re lucky gives you contagious optimism. I believed I should be a physician. I 58 believed I was bright enough, hard-working, idealistic kid who was good at math and science. (2010, p. 61) Having said this, Vonnegut recognizes that his optimism, though not particularly reasonable, in his case, turned out to be exactly the sort of delusion that increased his chances of succeeding. He wrote: Having a not entirely reasonable expectation that things will go well turns out to the exactly the sort of delusion that increases your chances for success in this world, be it getting into medical school or whatever. If you are skating on thin ice, the last things you want to do is slow down and think about it. (2010, p. 49) Passion. There is clear and consistent evidence that the participants in this study had a passion for their work and found a great deal of satisfaction from their work. Simon’s career in the theatre came from a passion she had at school working in a radio station. When she was first diagnosed she embarked on a journey across the U.S. to document the experiences of people with bipolar. Jiang’s passion for mental illness and to spread the word that people with psychiatric diagnoses could still be successful that he decided to work at a psychiatric hospital library and in his off time, has published many books on this and other subjects. Wong, a self-described “type A” workaholic, had a strong passion for reporting and writing and thrived on it. She spent her career chasing stories around the world and has written books on a wide range of topics including her experiences in China, cooking, and mental illness. As noted above, Gask, Saks, Jamison, and Hawkes found tremendous satisfaction working at better understanding the mental illness they have. Turning negatives into positives. A second factor that accounted for the success of these individuals was their ability not to dwell on the negative aspects of their disorders. Poor prognoses such as schizophrenia and multiple long hospital stays did not deter these 59 individuals. Jiang, North, Saks, and Hawkes, all continued to push forward in their educational and occupational goals, despite their challenges. Others, such as Jamison and Cheney both viewed some of their symptoms as advantages, such as using their hypomanic states to be productive in their work, seeing it as a positive rather than a negative. Being okay with being alone. For several participants, escape and avoidance served as a coping strategy. Many such as Jamison, Cheney, Hawkes, Thompson, and North spent a great deal time alone. Jamison escaped to her lab as a student and would often close her office door and put a “do not disturb” sign on the door when she was too depressed to work. Cheney spent a lifetime avoiding the public when she was depressed. As a young girl and teen, she missed school a great deal of school when she was not able to present herself as the confident put-together person she portrayed. This practice continued on during law school and work where she would close her door when she had to go to the office and come in only at night to work when no one else was around. While North was in medical school, she found the stimulation of the anatomy lab when all the students were there too much: Her strategy was to go to the lab at night when the students were asleep to get her work done. Putting on a mask. Interestingly both Cheney and Gask talk about putting on a mask or armor in their professional roles. Cheney (2008) described he impeccable power suits and pricey haircuts she used to present herself as “a star in the making cold chilly with a calculated twinkly no-nonsense pinstripes” (p. 23). Gask (2015) described her persona as a doctor and a psychiatrist that differed greatly from her internal state. “I was able to give the appearance of steel and ice but this was, and still is, just a performance. 60 Inside, beneath the surface, it was just jelly and water” (p. 61). Jamison stated that she worked hard at behaving as normal as possible by tempering the most extreme of her symptoms. This was not an easy task but she stated that with “fierce self-discipline and emotional control-with occasional cracks” she was successful (2011, p. 23). North too worked hard to present as ‘normal’ at school by suppressing the ‘voices’, but once at home, she let them take over as keeping them at bay was tiring. Negative coping strategies. Not all the coping strategies adopted by these individuals were positive. Several of the participants admitted exacerbating their symptoms by taking on a heavy load at school or working long hours. Jiang, for example, believes that his two psychotic breaks as an undergraduate were caused by his heavy workload and chose to take the next degree part-time to avoid more psychotic breaks. Hawkes admits that her refusal to remain compliant with her medication for many years made her situation worse. She believes that the multiple psychoses that resulted from not taking medication resulted in much lowered cognitive capabilities. Thompson, Hawkes, Cheney, Vonnegut, Gask, Jones, and Kennedy reported using drugs and/or alcohol as a form of escape. Both Cheney and Hawkes reported eating problems and Hawkes also used cutting as a coping strategy. Education For this group, education was a major route to their employment success: Becoming a professor, lawyer, librarian, doctor, and journalist requires advanced education. In the sample, Kennedy, a politician, and Simon, a theater producer, are exceptions in that their employment did not require a specific advanced degree for their success. 61 Many of the participants reported being good students and receiving excellent grades. Cheney, for example, did very well as school and was a precocious writer. She received special tutorial sessions from a university professor while in high school as he believed she was a gifted poet. Despite missing a lot of school as a child, she was always an excellent student. She points to her father as a key reason for striving to be an excellent student: “Winning my father’s love meant getting an A-plus at something. Not an A, mind you. Mere As were for ordinary folk who didn’t have the extra special something it took to rise above the pack” (2011, p. 17). Cheney’s desire for her father’s attention led her to be the top student in the class throughout her schooling. She was valedictorian of her class and received near perfect SAT scores. When Cheney (2008) thought she would not do well on an assignment she believed it was better to die than to face a less than perfect grade (p. 19). For Jones, scholastic achievement was a source of well-being and identity in a world where he did not fit in. He described his childhood as a “nightmare” being verbally tormented brutally and relentlessly: “My contemporaries effectively totally excluded me from conventional society…I was truly a pariah” (2011, p. 15). Academically, Jones was a star: He graduated at the top of his class. When he attended college, he lived in a residence with others students who had received a similar scholarship for having excellent grades. He noted that, like him, these students were a bit odd, and as a result, he felt more at ease with them. He graduated third in his class in law school and the faculty treated him as special. He noted that his ego was tied to his grade point average and to keep up his near perfect grade point, he studied incessantly (Jones, 2011). 62 Saks (2007) not only was an excellent student, she found the structure of school and the joy in spending her days learning and arguing with others about philosophy gave her a structure for her day: “Suddenly, I had attainable goals, a sense of productivity and purpose, and tangible results against which I could measure my progress” (p. 41). Hawkes was the only individual in the sample that initially set out to complete a PhD but changed her mind. Her grade were excellent and she received prestigious scholarships and awards, but faced challenges while doing her master’s with her supervisor, and when she found a new supervisor for her PhD, she felt that she had reached a point where she felt she could not do the work as a result of numerous psychotic breaks that left her impaired cognitively and that she had arrived at the conclusion that her goals had changed and a master’s degree was sufficient to work in a laboratory. For some, their illnesses made schooling challenging and this was reflected in their grades. Jamison noted that her grades were spotty. When she was well her grades were good, but when depression hit, her grades plummeted. She reported that she was able to graduate as a result of working in the laboratory of a professor that lead to publications; these counterbalanced her low grades. It is interesting to note that such flexibility is assessing academic performance is not common in academia. For Cheney, the structure of law school proved to be a great challenge for her due to her increasing mood swings. Shortly after starting law school, she fell into a depression and consequently missed a lot of classes and could only bring herself to school to take exams. Not surprisingly, he grades suffered. Cheney (2008) stated that law school was 63 the “biggest mistake I ever made” (p. 262). Despite this, she did manage to complete the degree and pass the bar. Getting Support Looking to a therapist, friend, colleague, family member, or clergy was a strategy most of the participants employed. Cheney opened up to a senior associate who, like her, was an ‘outsider’. Both were keeping a secret; he had AIDS and she had bipolar. Together they could share intimacies that made having to hide who they were more bearable. Jiang found a counselor who believed in him and his goals of doing a Master’s degree. North had a boyfriend during her undergraduate years who was very supportive of her when she was diagnosed and hospitalized. He would visit and bring her homework so she could continue with her studies. Later on, North found a counselor she trusted and believed in her determination to complete school. Some like Gask, Jones, and Cheney reported supports but also state that they were hard on friends and family due to their illness or personality of a combination of the two and tended not to keep them in their lives for very long. Support From school. A common point for many of the participants was the flexibility of the faculty and the institutions they attended that allowed them to weather the ups and downs of their illnesses. Jiang, for example, had two psychotic breaks that resulted in hospitalizations during his undergraduate years that affected his course work. He stated that he was able to graduate on time because his professors provided him with some allowances: One gave him an “A” despite not taking the final exam because of his earlier excellent grades in the course and another made him jump through a few hoops before he was allowed to make up some of the course assignments in order to allow him 64 to pass. He did explain that “hoops” through which he had to jump were due to his rudeness to professor earlier in the semester. Jiang’s memoir included a section that provides suggestions to future students with a mental illness on how to succeed at school. His suggestions came from some of the factors that facilitated his success which included two seemingly-contradictory pieces of advice: pacing and studying constantly. In his undergraduate years, he took on very heavy course loads while working to support himself and felt that this contributed to his psychotic breaks. During his graduate degree, he studied part-time and was able to get a grant that allowed him not to work. During both degrees, he stated that studied as much as he could. Individuals also noted that the flexibility they were offered in scheduling and course load were helpful. Saks, for example, found a stark difference between her studies at Oxford University and law school: The latter provided sufficient flexibility for her to be able to learn at her own pace and take the time she needed to heal without too much disruption. This experience was in contrasts to the highly structured nature of law school that required regular attendance and constant studying. Saks (2007) stated that “within days of beginning my class work at Yale, I was on a treadmill that seemed to have no ‘stop’ button on it” (p. 122). She was hospitalized two weeks into her first semester. Saks (2007) left against medical advice because she was determined not to miss any more school. She stated: “My determination to go back to school was not part of my delusional thinking; it was part of myself. I believed myself to be the person who would go back to law school and finish it” (p. 184). 65 Jamison (2011) found her college years very challenging despite doing very well academically. She described it in the following way: College, for many people I know, was the best time of their lives. This is inconceivable to me. College was, for the most part, a terrible struggle, a recurring nightmare of violent and dreadful moods spelled only not and again by weeks, sometimes months, of great fun, passion, high enthusiasms, and long runs of very hard but enjoyable work. (p. 41) The formal academic schedule for Jamison (2011) was “like the rest of the world’s schedules (are) based on an assumption of steadiness and consistency in moods and performance” (p. 47). Her bipolar swings were quite intense: She would be very productive in spells and do well and when her depression hit, she could not go to classes. During these times, she could not work and could not do assignments and as a result failed some of her courses. Her transcripts were peppered with excellent grades and failed course. One factor that made a difference for Jamison was the support of a faculty member who offered her a job in his lab. She met the professor while she was taking a course in psychology with him as a freshman. He found her fascinating (after reading her creative responses to Rorschach test that the class was assigned). He offered her a job in his lab and she found the work and the environment very supportive. She found the lab “not only a source of education and income, but escape as well” (p. 47). The research offered her an “independence and flexibility of schedule that I found exhilarating” (p. 48). She worked hard and was productive. She noted that the research papers she wrote from the lab results are what enabled her to be successful academically despite the spotty transcripts. Her advisor argued that these papers demonstrated her competence and she was successful. 66 Jamison’s initial goal was to become a doctor but recognized quite early on that the medical school was quite structured with expectations of sitting in a class of much of the day, she did not believe she could succeed given her mood swings and her restlessness (p. 53). She opted for graduate school in psychology as she was aware that it offered her a lot more independence in her studies and she knew she learns better on her own. She noted “I loved research and writing, and the thought of being chained to the kind of schedule that medical school required was increasingly repugnant” (p. 53). She loved graduate school. Graduate school was not only relative freedom for me from my illness, but it was also freedom for the highly structured existence of undergraduate studies. Although I skipped more than half of my formal lectures, it didn’t really matter; as long as one ultimately performed, the erratic ways that one took to get there were considerably less important. (p. 57) Jamison’s supervisor was very supportive of her. She did not disclose her illness but she stated that he too was “inclined to quick and profound mood swings” and he was “exceptionally kind in understanding my own fluctuating moods and attentiveness” (pp. 53-54). She noted that they did talk about depression and the possibility of taking antidepressants but both were skeptical about how effective they would be. All through her undergraduate work she had not seen a psychiatrist and was not on medication. Interestingly, she stated that she was studying clinical psychology where diagnosis of mental disorders was part of the curriculum but still was in denial of her illness. Support from work. For many of the participants work was a double-edged sword; on the one hand, it was a place that provides meaning and a sense of fulfillment but on the other it was a source of stress and a place many felt they needed to hide their illness to 67 thrive. There are some factors that emerged from the stories regarding how the nature of their work made it easier for them to thrive. One of these themes was flexibility with time and schedule. The life of an academic is very demanding and requires long hours and the ability to navigate through a system that can be fraught with challenges but beyond having to teach at a set time, much of the work can be done at the individual’s own pace. Additionally, summers tend not to require teaching can provide a respite from the structured nature of a teaching schedule. Saks, Jones, Jamison, Gask, North, and Wong all have academic positions and some have been extra-ordinarily productive. Both Jamison and Saks received “genius” awards, and some like Gask and North, who are both doctors as well as academics, have hundreds of publications under their belts. Despite the long hours and hard work, all have noted that the flexibility in when they did their work, made navigating work and illness possible. Jones, for example, reported that the summers where he did not teach provided him with the opportunity to do research but also to take care of his health. During these periods he could address his periods of depression without formally taking time off. Jones like Saks, Jamison, Gask, and North did not disclose their illnesses until fairly late in their careers so it is unclear whether keeping silent was a benefit to avoid stigmatize resulted in a liability as they were not able to ask for accommodations due to their illness. It is interesting to note that of the individuals who worked in private sector organizations (i.e., Jones for a time, Cheney, Simon, Vonnegut, and Wong) reported more difficulties with work. Jones was essentially fired (i.e., he was told to look for another job) because he could not get along with other people. In the academy, his interpersonal 68 problems did not disappear but the flexibility where and when he worked and presumably tenure protected him from such as easy dismissal as he experienced in the private sector. Cheney eventually shifted from her high powered 24/7 private law firm to a smaller firm and then began working for herself to gain more control over her schedule. Simon’s work was busy but it appears that being in the artistic sector provided her some flexibility in her schedule that allowed her to avoid a “9 to 5” job. Vonnegut worked in a pediatric medical office with some colleagues, this semi-independent work give him the freedom working for someone else might not have but he did state that after a psychotic break, his colleagues had some concerns and wanted to talk to his psychiatrist to ensure he was fit to work. Wong (2012) stood out from the other participants in that her employer and the insurance carrier did not believe that she was truly ill; rather, they argued she was malingering. She argued that major depression was precipitated by the personal attacks she received after printing an article in The Globe and Mail newspaper. The story focused on a shooting that occurred in Québec where she wrote that this school shooting and the previous two shootings had been perpetuated by immigrants and that Québec was a culture that values its “pure laines” or French Québequois. The backlash that came from this story was strong and fierce. Québec citizens boycotted her father’s restaurants (he lives in Québec) and both the Premier of Québec and the Prime Minister publicly denounced her and requested that she apologize to the people of Québec. She personally received several death threats. She argued that what made it worse was that her employer did not support her as it normally does for journalists and told her not to speak of the situation. 69 When her doctor told her to take time off work as she was not sleeping, very anxious, and diagnosed as clinically depressed, her carrier refused to pay for her leave. Her employer required her to return to work as a result. She wanted to return to work but realized she could not write and would not be able to do her job if she did return. She eventually was fired from her job because her employer believed she violated the instructions to keep silent about the events. She eventually won the grievances her union filed and had an independent medical examiner supported her claim of being ill. She argued that the behaviour of her employer played a large role in causing the depression in the first place and exacerbating the illness. One interesting element to Wong’s story was how different types of stress affected her illness. Wong’s job as a reporter and writer put her in many dangerous and lifethreatening situations and working on tight deadlines in the newsroom increased the pressure on her. She stated that she never shied away from the stress. She is a selfdescribed “type A workaholic” chasing stories wherever the paper sent her, working long hours, and argued that she thrived under these stressful conditions. Yet the type of stress she experienced after the article was printed, the death threats received, as well as the way her employer treated her during her illness was a form of stress she was not able to handle. Gask, too, reported that her high stress work as a busy psychiatrist and academic did not affected her negatively, but the stress she experiences interacting with her supervisors and administrators did negatively affect her negatively. The effect of different forms of stress in this sample is important to keep in mind. It is no uncommon for professionals to recommend low stress jobs for people with SMIs to 70 keep their symptoms to a minimum, but it may be that it is the types of stress that matter rather than the amount. Nature of the Work The range of professions chosen by this group is relatively small. Most are academics and medical professionals, and writers. The two exceptions are the youngest; Jiang (librarian), Simon (producer, but also a writer), and Kennedy (politician). One important reason identified for their choices is that these professions provided a level of flexibility, in terms of where, how, and when their work was done, that enabled them greater ability to navigate their illness with the stressful demands of work. For others, working as lawyers in the private sector was a challenge. As noted above, Jones’ lack of interpersonal skills were on display constantly and resulted in his dismissal. As Jones (2011) noted reported that he was unsuited for working there and felt more at home in an academic environment. As stated earlier, he lacked the requisite social skills needed to succeed in an environment where getting along with others was a necessity. Saks, despite qualifying as a lawyer, realized early on that the nature of private practice would not be her route to a legal career. Both decided to focus on an academic career that would be more flexible and less stressful for them. Organizational and Work Structure For a number of the participants, having the flexibility to study, attend school, and work, played a large role in how well they were able to negotiate between work, and their illness. Control over when work is done and the ability to work at home when needed also provided individuals with enough flexibility when symptoms are at their worst. At the other extreme, this flexibility also enabled these individuals to stockpile work when 71 they were feeling very well. For Cheney, when she was low, she came to the office in the middle of the night, while all her colleagues were home. Job Accommodations For many in the sample, the fact that their work provided the flexibility needed, likely removed the need for asking for formal job accommodations. That said, because many had not disclosed their illnesses to their employers, it is not possible to assess if an accommodation would have helped them as these options were not available to them. Some, like Hawkes, was able to arrange work part-time and take long periods off because of her illness without undue hardship work-wise. In the stories, the consequences of failure to accommodate was clearly demonstrated in Wong’s case where her employer insisted she return to work and accused her of malingering rather than accommodate her illness. The contrast between the public sector (e.g., university and health sectors) and the private sector (e.g., newspapers and law firms) in accommodation is seen in the sample. The two individuals, Wong, and Jones, that were fired were in the private sector, while Cheney opted out of her high paced law firm because the pace was relentless and the explicit stigmas did not afford her the ability to ask for an accommodation without a penalty. Social Policies and Legislation For a few individuals, the role of larger structural factors affected their experiences. Jiang had a strong desire to work and be productive following his graduation but he was prohibited from doing so while he received disability benefits. As these benefits enabled him to have his medication and doctors’ appointments paid for, he was reluctant to lose 72 this benefit. Prior to this, he had been putting these costs on his personal credit card. He opted to volunteer his time and was able to find paid work through a supported employment program. The work, selling t-shirts, was not commensurate with is education and interests, but it was all he could do and not lose the benefits. The legislation eventually changed and made it possible for him to receive disability benefits work for pay. One individual, Kennedy, helped pass legislation providing parity for mental health treatment and coverage of treatment. He discussed how the laws in the U.S. had, until recently, failed to cover payment for medication and treatment for those needing mental health treatment vis-à-vis physical illnesses. The passing of the Parity Act, assisted many Americans, including Jiang. For a number of participants, discriminatory legislation affected their experiences getting admitted to professional programs such as law and medicine and getting licensed. Saks, Jones, North, and Jamison reported facing barriers as they moved forward in their chosen careers. Saks reported that most of the law schools she applied to (with one exception) asked applicants to declare if they had ever been forced to take a leave of absence from school for emotional difficulties. Jones faced a similar questions when applied for the bar in Florida. For Jamison, the application process for medical licensing in California asked about whether the applicants had a history of mental illness. She reported being fortunate enough not to have had her psychotic break until after she applied, but lived in fear of losing her license if people found out about her illness. For North, her illness and hospitalization resulted in her being expelled from her medical 73 school with no recourse for appealing the decision. In more recent years, with changes to human rights’ legislation such practices are no longer tolerated. Stigma The stigma that exists around mental illness has received tremendous attention in the literature and its negative effects have been well documented. The individuals in this study are no exceptions to facing stigma. Three forms of stigma can be identified is the study: (a) public, (b) self-stigma, and (c) structural. Public stigma refers the stereotypes, discrimination, and prejudice people have against individuals with a mental illness while self-stigma refers to the stereotypes the individual internalizes and believes that come from the social world as well as the limitations and individual imposes on themselves as a result (Corrigan & Watson, 2002). Structural stigma refers the laws, policies, and programs that treats those with a mental illness in a manner different from other groups. Table 5 presents the 3 types of stigma each individuals reported experiencing. All the participants in this study wrote about experiencing some form of stigma in their autobiographies. All the respondents reported public stigma, the majority of respondents reported some form of self-stigma, and more than half reported structural stigma. Public stigma. All the participants experienced public stigma in their journeys. North reports many instances where the diagnosis was treated as the end of any semblance of normal life such as career, education, or even independent living. When North (1987) was diagnosed with schizophrenia, she was told that she would never get better and she likely would be institutionalized her whole life. During her hospitalization, she pressed her 74 Table 5 Forms of Stigma Reported by Authors Name Public Self Structural Cheney Yes Yes Yes Gask Yes Yes Yes Hawkes Yes Yes No Jamison Yes Yes Yes Jiang Yes No Yes Jones Yes Yes Yes Kennedy Yes Yes Yes North Yes Yes Yes Saks Yes Yes Yes Simon Yes No No Thompson Yes Yes No Vonnegut Yes No Yes Wong Yes Yes Yes doctors to let her return to school, she stated that they were quite dubious about the likelihood that she would succeed. When she applied for medical school she was honest about having a mental illness but her doctor, being sensitive to public stigma, chose to diagnoses her with “adjustment disorder” because she did not want to jeopardize her chances in the future. North also noted that the nurses she worked with on psychiatric ward made callous jokes about schizophrenics when she was a student doctor. Hawkes (2012) described an incident when she was getting a new identification badge to work on the psychiatric floor to avoid “the crazies” on the ward (p. 180). Cheney’s (2008) law partners at the firm she worked at represented people with mental illness, but did not tolerate employees with the same. She recounted an episode during a lunch where she and 75 the firm’s partners were eating with someone who disclosed his bipolar illness: When he left, the partners all made fun of him (p. 26). She was very aware that disclosing that she had a mental illness would have deleterious effects: She stated “I only knew that I had to keep it (the disorder) secret or else. Or else what I wasn’t quite sure, nor was I willing to find out” (p. 24). Cheney (2008) worked very hard at presenting an image of being a tough no-nonsense lawyer. If she could not do this, she did not come to work but rather called in sick or she opted to come in at night when all the others had left for the day to get here work done. Even when she moved to a more liberal law firm that fought for the rights of the poor and weak, she stated that they only tolerated mental illness in their clients, not their colleagues: “Weakness in a client is one thing, but weakness in a lawyer is something else altogether” (p. 78). Wong’s (2012) experiences were particularly damaging as it resulted in not being paid (wages or disability payments) what she was entitled to and ultimately being fired by her employer. She states that despite medical reported by her psychiatrist, both the carrier and the employer believed she was malingering and insisted she return to work. For example, Wong writes “after I told the Manulife intervention specialist I still could not write, that I’d been testing myself by trying to write my book and couldn’t she repeated “you’re not sick. Your leave would not be supported” (p. 90). Wong’s employer also refused to believe her. It seemed that Wong did not act sick enough to considered depressed. Although she ultimately won the grievances she filed and an independent review agreed with her doctor’s diagnosis, she still lost her job over this matter. All the participants endorsed being aware of the negative public stigma that exists for those with mental illness and believed that others would judge them for their illness. 76 Every one of the authors discussed how they were careful not to disclose their illness or act in a manner that might alert others of their illness out of concern over the ramification. For Saks (2007), any absences from school due to her illness that needed to be justified would avoid any mention of her illness but rather focus on other made up reasons. When she took time off school at Oxford she told them she was on an “extended vacation” and she explained dropping out of law school for a semester as needing time to decide if she really wanted to continue with law school. She also noted that she took every step she could to “hide” her illness. She believed she could not risk people finding out about it until she had the security of tenure. She noted that with tenure in place, she had “little to lose at this point in my career” if people found out about her disorder (p. 347). That said, Saks (2007) was cautious about “coming out” as she was concerned about how her friends, colleagues and students saw her. “Maybe once they knew the truth, they’d see me as too fragile or too scary to trust as a professional colleague or an intimate. Maybe they’d believe that a tragic, violent breakdown was inevitable” (p. 330). North (1987) strongly believed that passing as normal was crucial. She stated that when the voices became louder in her head, she needed to work harder to keep then at bay and to pass as normal. North (1987) wrote: I would have to work hard to strengthen and refine my skills in order to succeed in the ordinary world. The regular world meant a lot of me, and would have to work harder to it my new experiences into it smoothly. (p. 67) Thompson (1995) stressed her attempts to hide her illness others fearing that she did not want to be “labeled hysterical, neurotic, out of control” and she adds that in the South where she lived, it was particularly important for women hold “their emotions in check. Intensity of feelings could get you labeled as crazy” (p. 56). Her hesitation about coming 77 out with her depression was the fear that it would harm her career. Many of her friends and colleagues tried to dissuade her from going public for this reason. Cheney (2008) went as far as paying for her therapist herself rather than using company benefits, rather than risk her employer finding out about her illness. She was careful to keep her symptoms under control. She tried to toned down her reactions and slowed down her speech when she was manic. When she was depressed she hid away, coming in later at night to get her work done or if she had to be at work during the day, she would close her office door. When she did get too ill to work or if she had a therapist appointment, she had medical excuses such as having dental appointments or the flu to justify the absence. As a lawyer she was asked to fill in forms that asked if she had ever been diagnosed with a mental illness she would put that she had a “hypothalamic disorder” to avoid the stigma of saying she was bipolar. Self-stigma. With respect to self-stigma the majority of respondents reported they were in denial about having a mental illness or were unwilling to seek help for the same. Jamison (2011), for example, was reluctant to seek treatment for her mood swings because she believed that she could handle her issues by herself. She noted that she realized that she was in denial as all her training and research into the disorder she did told her it was critical to seek treatment. When she did get some help a decade later, she reported feeling terrified and deeply embarrassed to make an appointment with a psychiatrist. What forced her hand was her fear that she might lose her job. When the psychiatrist told her she had bipolar disorder, she was resistant to the diagnosis: “I knew in my mind to be true. Still I flailed against the sentence I felt he had handed to me” (p. 87). Further, she actively resisted taking her medications despite knowing the 78 consequences of not doing so. She states that “some of the reluctant, no doubt, stemmed from a fundamental denial that what I had was a real disease” (p. 91). She also noted that giving up her manic states was also hard even when she knew that they invariably led to bouts of depression. Gask (2015), like Jamison, was well aware of the symptoms of depression as she was a psychiatrist and wrote on the subject. Despite being fully aware of the effectiveness of treatment for her clients, she was quite resistant to her own treatment she noted that that “it was easier to deal with other people’s problems that my own doubts and uncertainties” (p. 75). Being a doctor gave her a “purpose” and “identity” in life but did not help her accept her illness. She resisted taking medications as she did not like the side effects even though she would prescribe them to her clients. She eventually turned to a colleague and friend and was willing to talk to her about her suicidal ideations and other symptoms. Her friend told her that she had had severe depression and Gask (2015) was not completely surprised. She wrote: “despite taking antidepressants intermittently, and considering all my knowledge and training, it was still difficult to accept this diagnosis” (p. 177). When she was quite unwell and her doctor wanted her to take time off from work she did not think that it was warranted. When a physical disease (salmonella poisoning) hit her, she did not hesitate because the latter was a ‘legitimate’ reason while the former, in her mind, was not. Wong admitted to holding some very strong biases and holding stereotypes about mental illness. She believed she could not get depression because she was tough and strong. It took many months of not being able to write, crying, feeling anxious, experiencing panic attacks, constantly forgetting things, and isolating herself, to 79 recognize that she was experiencing a mental illness. Despite this, it took her eight months before she finally accepted the diagnosis. Even with the recognition that she was clinically depressed, she was concerned about taking anti-depressants. Wong (2012) stated: “Like so many sufferers, I was affected by stigma. The word “mental illness” scared me. I thought depression meant you were nuts. I thought it only afflicted the weak. I was strong, it could never happen to me” (p. 20). Finally, Cheney (2008) stated that “I’m still ashamed of having a mental illness. Perhaps I’ll always be ashamed.” (p. 162). Some participants did not share in the self-stigma identified by many of the participants. Vonnegut, Jiang, and Simon, for example, accepted their diagnosis and did not exhibit any resistance to treatment. That said, Vonnegut, during the early years of his illness, resisted the idea of having schizophrenia preferring to believe he was choosing to live a life that did not conform to the standards of society at that time. The result was that he did not take his medication following his first hospitalization. As he got older, he did change his way of thinking about his illness, which was then re-diagnosed as bipolar. It is interesting that, despite the struggle some respondents had in accepting their illness due to self-stigma, some viewed the symptoms as either contributing to success such as Gask, Saks, and Jamison who became experts on their own illnesses and made numerous contributions to their respective fields. Structural stigma. This form of stigma is found in existing policies, programs, and laws that exist that either overtly or covertly discriminate against those with a mental illness. Some examples are found in a previous discussion of structural factors. Those in my sample who are older such as Jamison, Saks, North, Jones, and Vonnegut, all reported overt forms of discrimination such as applications forms to medical school, law school, 80 and the bar, that explicitly asked them to identify any diagnosis of a mental health disorder, psychiatric hospital stays, or any leaves taken due to a psychiatric issue. Saks (2007) noted that when she initially applied for law school, the required Law School Admission Test (LSAT) asked applicants to identify if they had been “civilly committed” to a psychiatric hospital (p. 166). Jones reported that during the time he was studying for the licensing example for lawyers called the bar, some states including Florida where he took the exam the application form asked for a history of mental illness. As he did not go to a psychiatrist until after passing the bar, this was not an issue for him. Jamison asserted that medical school had similar policies in terms of getting and keeping their licenses to practice. She personally knew many people who were not allowed to continue their studies because their history of a psychiatric illness. It was for this reason that she kept her condition quiet. My early years on the faculty of UCLA were plagued by fears that my illness would be discovered, that I would be reported to one kind of hospital of licensing board or another, and that I would be required to give up my clinical practice and teaching. (2011, p. 131) Several of the participants reported incidents of outright discrimination when the hospital that were admitted to contacted the school about their hospitalization and illness and informed the school that the individual would not be returning to school. For example, when North was in medical school she was hospitalized during her second year. The hospital contacted the school who deregistered here: When she was ready to return to school, it refused to reinstate her. Her dean tried to advocate for her but despite his insistence that she was fully capable they still refused. She had no choice but to apply to other medical schools and transfer. She was accepted at one centre and was admitted so she could complete her medical degree. Like North, Saks (2007) experienced the same 81 challenges with stigma. When she was hospitalized while in law school, the doctors made sure was admitted as a voluntary patient to not affect her. At the time, there were questions for law school admission applications commonly asked questions about history of mental illness and time spent in treatment (Jones, 2015). One presumes that the doctor’s advice was based on lessening the potential stigma of an involuntary admission. That said, in her admission during law school, the hospital took it upon itself to call the Dean of the law school she attended to inform them that Saks would not be returning to school this year and possibly forever due to her disorder. Upon hearing this news, the school withdrew her (Saks, 2007). Despite this, she was determined to return and did not believe her disorder should stand in her way. Saks (2007) stated “my determination to go back to school was not part of my delusional thinking; it was part of my self. I believed myself to be the person who would go back to law school and finish it” ( p. 184). In order to be readmitted, Saks was required to meet with the health of the university’s psychiatric department. No one at Yale asked for her medical record meaning that the specific diagnosis was not known. Saks took it upon herself to find out what questions would be asked and memorized the expected answers. Such privacy violations prevent such overt disclosures, but as Hawkes stated that the sick note she presented to her profession was on the psychiatric hospital letterhead thus alerting the individual of where she was hospitalized. School policies and structures were also reported to be a problem for some of the individuals. For Jamison or Saks, the absences she incurred due to her ‘ups and downs’ left her with a very spotty academic record. As noted above, questions about mental health history were very common in some applications forms in the past, creating barriers 82 for many and necessitating ‘creative lying’ for others to minimize the negative impact of disclosing. For example, North (1987) stated that “it hurt me to have to tell the truth on the application forms that asked about any history of mental problems, but I could never lie” (p.162). One thing that did help her is that her psychiatrist diagnosed her with an adjustment disorder rather than schizophrenia. Intersection Between Academic and Professional Work and Illness For a majority of the participants, their SMI was linked to their academic and professional work. Hawkes, Gask, Jamison, and Saks have focused their professional interests in researching the disorder they have. For Hawkes, Jiang, Jones, Kennedy, Simon, Thompson, and Wong, their professional interests focused on mental illness more broadly. Saks started her university career studying philosophy but switched her focus after receiving the equivalent of a master’s degree at Oxford University. Following her graduation, she stayed at Oxford attending lectures in psychology and law. She stated that she was particularly interested in the insanity defence. She noted that it was an issue that affected people’s lives including herself. She struggled with the choice of doing graduate work in psychology or doing a law degree. She does not say why she picked law, but she applied to law school knowing that she was not going to practice law as is generally assumed law students do. For her, the structure of the course work in law school helped her with her symptoms. Unlike Cheney and Jamison who both found the structure of professional school (i.e., law for Cheney and medicine for Jamison) challenging with their disorders, Saks thrived on it. Following graduation, Saks sought an academic position and found a two-year contract position teaching legal research and writing. She 83 enjoyed the flexibility of the position to allow her to schedule appointments with her psychiatrist. This appointment led to a tenure track position. Saks (2007) recognized that work and its schedule was what kept her well: “I knew that work more than anything else I could do, would steady me” (p. 247). That said, she also learned to recognize when signs of her illness occurred and at these moments, she had the flexibility in her job to recoup her energies at home. She received a PhD in psychoanalysis in 1986 as a result of her personal experiences with therapy. She has had a lifelong interest in mental illness and the law studying involuntary commitment and decision making and mental illness, aging and schizophrenia. She has spent her academic career teaching mental health law and has written many books and articles centering on the intersection of law and mental illness. Gask (2015) studied sciences in high school and thought she would become a science teacher. It is in her mid-teens that she considered becoming a doctor. Her major rationale is that she was good at sciences. She only considered psychiatry after a completing her rotations in different areas of the hospital: This experience taught her two things, that she was not particularly suited to be a general practitioner and that she showed some aptitude in her psychiatric rotation. She credited her background and illness as making her well suited as she believed her strong sense of empathy comes from these. She also noted that having been ill and a patient, she has learned to “be a more humane and understanding therapist” (p. 15). She is aware that her profession focuses on “treating those with the same problems which have afflicted me throughout my life” (p. 9), but does not state that it has helped her with her personal illness. In addition to her MD, she earned a PhD focusing on improving communications between therapist and patients and 84 more than 180 publications on mental illness and depression particularly. She has spent her career studying her illness and derives great satisfaction helping others and better understanding mental illness in society. As she states “I’ve learned a great deal about depression in my life. I know much more about what causes it and its consequences than I did in the past. I can help people who suffer from it” (Gask, 2015, p. 254). Jamison (2011), for example, stated that her illness closed some doors for her but opened other ones. Her mood swings and depressions affected her decision to not apply for medical school. As she noted: It had become clear to me that my mercurial temperament and physical restlessness were going to make medical school - especially the first two years, which required sitting still in lecture halls for hours at a time an unlikely proposition. I found it difficult to stay put for long and found that I learned best on my own. I loved research and writing, and the thought of being chained to the kind of schedule that medical school required was increasingly repugnant. (p. 53) Her illness also guided her toward a career as an academic studying bipolar disorder. I became, both by necessity and intellectual inclination, a student of moods. It has been the only way I know to understand, indeed to accept, the illness I have; it also has been the only way I know to try and make a difference in the lives of others who also suffer from mood disorders. (p. 5) She viewed her illness as an enemy and in order to conquer it she needed to understand it. Despite choosing to study the illness she was later diagnosed with, she was resistant to admitting she was bipolar and even when she admitted having the disorder, she refused treatment believing that she would handle it on her own. She stated, “even after my condition became a medical emergency, I still intermittently resisted the medication that both my training and clinical research expertise told me where the only sensible way to deal with the illness I had” (p. 5). 85 Hawkes did not attribute her illness for her initial choice to study neuropsychology, but she does state that her decision to work in a lab that studies schizophrenia was in part due to the illness. Following her master’s degree, she realized that she could not do her PhD in the same lab as she and her supervisor were having conflicts. She approached the professor who was studying schizophrenia and let him know that she had that diagnosis and she was interested in working with him. The professor told her that he saw the benefits of having someone with schizophrenia working in the lab. Even after she dropped out of her PhD, the lab became her career and she has been involved in research and publishing in on topic since. North’s (1987) choice of a career was not initially linked to her illness. In her junior year, her voices were telling her about “clarity of vision into far realms of existence, which she interpreted as a message that should study optometry” (p. 145). She changed her focus of study to sciences to meet the prerequisites. After doing very well in the sciences, she decided that becoming a doctor would enable her to reach her goal of “help(ing) people as much as I can possibly could” (p. 160). She was initially worried that having a mental illness might interfere with her goal. The applications did ask if she had a history of mental illness which he admitted to. Her grades were outstanding as was her medical entrance exams. Despite her fears she was accepted to her first-choice medical school but was asked to go for an interview. This was an unusual occurrence and she believed it was to make sure she was not “crazy”. Her choice of psychiatry came during her rotation in the topic. She enjoyed it and received some positive feedback from the patients about her ability to understand them. 86 Jones asserted that his interest in mental health law was linked to his illness. Once he disclosed to his dean that he was bipolar, he decided to write an article in a law journal about mental illness in the legal profession and included himself in the article. Following this, he embarked on other research on mental illness and became an advocate for mental illness. Kennedy’s (2015) personal experience with his mental illness was a primary impetus for dedicating his life to advocating for mental health reform. While in offices, he wrote that by accident he became poster boy for mental illness when he disclosed his illness publicly during a stump speech on mental illness. He became the sponsor of the Mental Health Parity Act that would ensure that those with mental illnesses and addictions were treated the same as those with a physical disease in terms of coverage. As he described it, “the Mental Health Parity Act is the equivalent of a medical civil rights act, a brain disease equal rights amendment” (p. 13). Six years later, he spoke to the New York Times about his illness in an attempt to bring the issue of mental illness to the forefront and to bolster support for his bill. He stated “I wanted to aggressively tie my personal story to my ongoing legislative fight for mental health parity-an effort to outlaw the rampant discrimination in medical insurance coverage for mental illness and addiction” (p. 4). After he left politics, Kennedy chose to form the One Mind foundation that engages in research on mental illness, addiction and brain diseases as well as the Kennedy Forum that seeks to bring the mental health community together. For Jiang, mental illness and advocating for better information and less discrimination has become a major life course. Although he did not set out to become a medical librarian working at a New York psychiatric facility and publishing more than 50 87 books on assorted topic for travelling, learning to speak different languages, poetry, and on mental and physical health. He has used his library skills to learn about himself and others who have mental health and physical challenges. His other books include a guide to natural mental health and weight loss and diabetes control advice. The latter book is the result of two side effects of taking his medication. His goal is to be “an influence for good in the world” in the way he is able to (Jiang as cited in Bundrant, 2017). Simon’s (2002) interests in school and her initial career were on the creative arts. She was a child actress and went on to study American history at Columbia University and work as the arts director for their radio station. She worked as creative producer at a New York theatre following graduation. Her focus on mental health began when she decided to engage in a cross-country trip to interview young people like her who had a diagnosis of bipolar. Her goal was both to find her tribe or the people who were like her and to address stigma by bringing to light high achieving young people with bipolar. Her autobiography is part of this journey across the U.S. She was a consulting producer for an MTV special about her journey. Since that time, she has continued to write for various publications including the Wall Street Journal. Her pieces have not centered on mental health but rather cover travelling, having a child, and other personal experiences. Like Simon, Wong, Thompson, Cheney, Vonnegut, have not centred their educational or professionals lives around the issue of mental illness. Wong (2012) did not enter the world of mental illness until her fifties. She admits that she knew very little about depression until then. Her experience and book has taught her a great deal but it has not resulted in a shift in professional focus. She did go on to get a Master’s degree in journalism and taught this subject at a Canadian university for a year. 88 Thompson (1995) reported that she had a lifelong interest in writing and spending a great deal of her career being a journalist. Her first attempt at writing about mental illness was a newspaper story about her personal illness in 1992. Her motivation was to remove some stigma regarding mental illness by treating it as others have treated physical illness by publishing about it. She noted that other journalist had written pieces on their surgery of other physical condition and asked why writing about depression should be different. Her memoir followed as did a book about her own experience with motherhood and depression. She has conducted a great deal of research on the topic of depression as a result of these endeavours. Cheney (2008) did not identify a connection between her illness and her chosen academic path and career. Although she did not elaborate, she did state that law school, with its structured classes and requirements was the worst mistake of her life. Her field of practice as a lawyer was entertainment and copyright law and beyond the books she has written on her illness, she has not ventured into the mental health as a profession. Vonnegut (2010), too, chose an educational and professional path that is not linked to his illness, yet prior to attending medical school, he had published articles and a book on his experiences with schizophrenia (his first diagnosis). As an undergraduate he studied religion as an undergraduate and after taking some science pre-requisites, attended medical school, and worked as a pediatrician in private practice with other colleagues. He noted that the side effects of his medication has affected his career as his hands shake which made it hard to at work. 89 How Work Environment Influenced their Wellbeing Some participants have identified how their work environment affected their wellbeing. Wong, Cheney, and Jones are three examples of individuals who had workplaces that contributed to or exacerbated their illnesses. For Wong (2012), the spark that started the depression was the lack of support she felt from her employer when she wrote an article that got a lot of negative public reaction. She described feeling betrayed by an employer whom she had been working 20 years. As the situation continued the employer and the insurance carrier both failed to believe her doctor’s diagnosis of major depression despite medical proof of the illness. For Jones, and to a lesser extent, Cheney, the pace and pressure of private law firms were not conducive to someone with bipolar. The long hours, the pace of work, the constant scrutiny by partners to assess whether someone is ‘partner material’ made it challenging for both of them. On several occasions, Cheney (2008) noted that the long demanding hours and lack of sleep during the big cases were a trigger to mania. At times, her mania benefited her and the firm’s work productivity as she was able to work harder and longer and produce more. For Jones, the combination of personality and mental illness made working in the private industry untenable. He recounts instances of working for first as a student where he was refused employment the subsequent year. After graduation he took a job at a private law firm and, in short order, alienated the secretaries and his “personality issues” also negatively impacted his relationship with partners and associates of the firm (p. 58). He was told he needed to start getting along with others as he was “arrogant and standoffish, overly sensitive to criticism and generally not their type of person” (p. 78). He was eventually fired as a result of these factors. He found an 90 academic job and feels that the telephone interview (as opposed to a face-to-face) likely helped a great deal in getting the job. The university setting did not eliminate his interpersonal problems. As a faculty member, Jones encountered similar interpersonal problems but there appeared to be more tolerance for the behaviour and once he achieved tenure, the job guarantee provided security rarely found outside the industry. Reasons for Going Public In 2006, Kennedy again went public by speaking to a reporter from the newspaper The New York Times. Given his family name, the story was front-page news. For Kennedy, going public with his own mental illness and addiction made it possible to sway many people away from some stereotypical notions of mental illness and he believed helped him move his Mental Health Parity Act along. He stated, “I wanted to aggressively tie my personal story to my ongoing legislative fight for mental health parity-an effort to outlaw the rampant discrimination in medical insurance coverage for mental illness and addiction” (Kennedy, 2015, p. 4). Kennedy also noted that going public also made it easier for others to come forward with their concerns. “You would not believe how many times a Congressman or other public official has pulled me aside for advice and counsel because they, or a loved one, suffers from a mood disorder or an addiction” (p. 15). He recognized that there is still a long way to go regarding stigma as many of these individuals were not public about their illnesses and they failed to publicly support the Mental Health Parity bill. Further, Kennedy (2015) noted that since he “came out’, he had been approached by “an enormous number of people who feel it isn’t sage to share their secrets of their illness” (p. 14). One major reason cited by the authors for writing about their illness was to address 91 one or more forms of stigma. North (1987), for example, wanted to provide hope and encouragement to patients with the same diagnosis. She reported having been ‘cured’ of schizophrenia through dialysis therapy and wants others to believe it is possible. In addition, her agenda is to confront public stigma. She faced many situations where belief that schizophrenia is viewed as dire diagnosis. Her doctor noted that “schizophrenics often chronically debilitated and indigent and would experience long periods of institutionalization” (p. 17). She wanted people to view how those with schizophrenia can be successful and part of society: “From experience, I knew that schizophrenias could be helped to lead more productive and satisfying lives, with a little personal attention to their special needs” (p. 17). Gask (2015) stated that she wrote her story to break down some stigma walls. She stated she wanted to “show that her experience as both a patient and a professional, questions the rigid lines that society draws between those who are mentally ill and those who are well” (p. 268). In doing so, she wanted people to realize that the lines dividing patient and professional, mentally ill and healthy are not clear and rigid. Her book was the first time she went public about her illness, prior to the publication, only her doctor and a few close friends were aware. This speaks to the awareness of the perceived and real consequences of being public with a mental illness. Hawkes’ (2012) decision to write was, in part, to “reach out to those professionals and help them see the person beyond the schizophrenia” (p. 238) and to minimize their views about what those with the mental illness are capable of achieving. She also noted that she wants to give “hope and inspiration” (p. 238) to those with the diagnosis as a way to chip away at self-stigma. In a similar vein, Vonnegut’s (1975) first book, The Eden 92 express, told the story of his experiences as a young man diagnosed with schizophrenia, ends with a letter to a fellow traveller, that he hopes his story has helped her deal with her illness. His second book, a follow-up, also served to show that having a mental illness is not a death sentence and his story is not unique or remarkable: “The difference between me and crazy people who have not done will is not much” (Vonnegut, 2010, p. 165). He also emphasized that people with mental illness are not qualitatively different: “None of us are entirely well, and none of us are irrecoverably sick” (p. xii). For Wong, writing her story was fraught with challenges. Her publisher backed out of the contract to publish the book for fear of legal challenges from The Globe and Mail Newspaper and she eventually lost more than $209,000 in settlement money from the employer due to violating a confidentiality clause by writing her book (Gray, 2014). She wanted to share with others how she was treated by her employer because she believes that her experience is not unique. Wong (212) stated: “The way I was treated is probably no different from the way many companies treat employees with a mental illness” (p. 9). Conclusion The content analysis of the 13 individuals with serious mental illness has shed light on the 4 key research questions in this thesis: (1) How have these individuals successfully navigated their educational and professional lives with an SMI?, (2) Is there a connection between their choice of education and profession and their mental illness? (3) How did stigma influenced their journeys, and (4) Why did they decide to write a public account of their lives? I briefly summarize these below. 93 Question 1: How have these individuals successfully navigated their educational and professional lives with an SMI? With regards to the factors that have facilitated or challenged them in their journey to success, the data suggest that most of the individuals exhibited a powerful drive to succeed early on in their lives and helped them push through their difficulties. Many individuals worked hard to do well in school. Some, such as North, Saks, and Jones, reported studying up to 18 hours a day during their university years. Most of the individuals reported being excellent students, and for some doing well academically served as measures of self-worth and approval for others (e.g., Cheney and Jones). As many reported ambitious professional goals that required being academically successful such as becoming medical doctors, academics, and lawyers, doing well in school was necessary. The majority of these individuals faced hurdles in their academic pursuits including being required to take long periods off school due to their illnesses and faced challenges concentrating and dealing with symptoms and side effects of medication (e.g., hallucinations, delusions, tardive dyskinesia, or drowsiness). Despite this, their determination and unwillingness to give up, led them to continue despite these challenges. Other factors that appear to have contributed to their ability to do well was their tendency to be loners and ability to spend a lot of time alone typically required for academic success. Despite this, many reported having strong support systems that ranged from family, colleagues, professionals, and friends. 94 Question 2: Is there a Connection Between their Choice of Academic and Profession and Their Mental Illness? The results indicate that, for many individuals in this population, there is a connection between their academic and professional work and their illnesses. Four of the individuals (i.e., Gask, Hawkes, Jamison, and Saks) all conducted research and published on the topic of their own illnesses. Others have focused their work on areas of mental illness (e.g., Jiang, Jones, Kennedy, Thompson, and Wong). For a number of individuals, the nature of the work (e.g., academia, medicine, law, journalism) lent itself to navigate the vagaries of their illness. These jobs embody an element of flexibility and security of employment that enabled many take time off for their illnesses with less attention than would have been possible in other, more structured work requiring physical attendance during set hours of work. The several individuals, including Jones and Cheney, who had high powered private sector jobs, found those environments harder to navigate with their illnesses. Question 3: How did Stigma Influence Their Journeys and how Where They Able to Overcome the Effects of This Stigma to Succeed? Every participant reported some form of stigma and discrimination in their journeys. Public stigma, or how others viewed or behaved towards them, was the most frequent form. This stigma ranged from comments from professionals in their lives, doctors, nurses, insurance providers, who were caring for them, or colleagues making statements about mental illness not knowing that the individual they were talking to had an SMI. As a result many reported expending a great deal of energy looking a ‘normal’ as possible and trying to hide any signs of illness including lying about therapist 95 appointments and illnesses to paying for their mental health bills fearing their employers may find out. A majority of the individuals reporting holding some prejudice and stereotyped ideas about mental illness. For some (e.g., Gask, Jamison, and Wong), it resulted in delaying the medical help they needed as they refused to acknowledge their own illness. That said, many recognized that their illnesses provided advantages and benefits to their professions (e.g., Gask, North, and Saks). For some, particularly the older individuals, reported many instances of structural stigma, particularly in terms of being required to disclose their illness when applying to professional school, doing entrance exams such as the Medical College Admission Test (MCAT) and Law School Admission Test (LSAT), and applying for their professional designation. Others were removed from their program of study by their schools when they were informed of their hospitalization (e.g., North, and Saks). Newer legislation including those targeting the right to privacy, freedom from discrimination based on human rights, and right to accommodations for their mental illnesses, has made it easier for the younger individuals in the sample as they navigated through school and work. That said, there are other structures that still affect the successful navigation through school and work, including inflexible rules and regulation that limit the time off someone can take to care for their mental health. Question 4: Why did They Decide to Write a Public Account of Their Lives? The participants had their own reasons for going public but two of the key reasons cited it to address the issue of stigma but showing others that one can have an SMI and become successful on their own terms. A number of these individuals have attained the 96 pinnacle of their respective careers, reached the highest rank of full professors, some at very prestigious institutions, became medical doctors and specialized into different fields. Many received prestigious honours and awards and in all respects defined the odds. In going public, many also sought to help others who are facing similar SMIs get the help they need, learn from some lessons learned and perhaps avoid mistakes such as medicine non-compliances and to instill hope for these individuals. Finally, a number reported a desire to stop hiding and lying about having a mental illness. As some noted, having to hide part of yourself is a daunting task and leads to wasted energy and some self-respect. In the next, and final, chapter, I discuss what the results mean in relation to the theoretical body of knowledge on the topic and on the profession of counselling and also outline the limitations of the study and propose areas for future research. 97 Chapter 5: Conclusion This study provided an in-depth exploration on how 13 individuals with an SMI have navigated the intersection of mental illness, education, and employment in a successful manner. Taken individually, any one of the published autobiographies is an example of an outstanding individual who describes the challenges they faced as well as the tools and resources that have enabled them to succeed where many have not. By considering them together, patterns can be extrapolated while maintain the uniqueness of each individual. The intent of this study was to study the 13 books collectively and conduct a content analysis in order to ascertain any common themes that can be used to better understand the challenges and successes of this group of individuals. The second intention of this research was explore the effects of stigma on their lives. The third intention was to shed some much-needed positive light on mental illness by making these success stories more visible and to chip away at stereotypes and discrimination faced by those with an SMI. In this chapter, I briefly discuss the main conclusions from the study, address the limitations from this research, as well as provide some suggestions for future research. Successful Navigation of Educational and Professional Lives with an SMI By design, this sample focused on a group of outliers who have succeeded in navigating school, work, and their SMIs. These journeys were not easy for any of these individuals; they faced many challenges along the way. Those with a diagnosis of schizophrenia experienced numerous hospitalizations, serious symptoms (e.g., hallucinations, delusions, paranoia, as well as catatonia in the case of North), multiple 98 diagnoses, and various medications that often resulted in adverse side effects such as tardive dyskinesia (i.e., involuntary movements), akathisia (i.e., the ‘walkies’), and a strong sedative effect that slowed down their cognitive processes. Those with a diagnosis of bipolar, such as Jamison, Vonnegut, Kennedy, and Simon, were subject to violent mood swings, manias that resulted in spending sprees in the thousands of dollars or a trail of broken relationships, and lows that drove most to suicidal ideation, for some repeated suicidal attempts. For some, the side effects of the medication were unpleasant (e.g., hand tremors and giving up the ‘intoxicating’ hypomania) and more serious (e.g., poor concentration and memory, toxicity that can lead to unsteady walking and slurred). For example, for Cheney, it was these side effects of toxicity that resulted in her arrest and imprisonment. Finally, individuals with MDD or for those in the low cycle of bipolar faced periods of depressions that left them completely incapacitated for long periods: During these times, they did not attend school or work, they hid from the world, had suicidal ideation and attempts, and experienced significant cognitive deficits. These and other consequences of their illnesses provided major challenges for these individuals, yet, they did not deter them from pursuing their dreams and goals, and eventually attaining them. The journey many individuals described was not smooth; there were many failed courses or dropped classes when their illnesses or hospitalizations were at their worst, a few were removed from their program of study despite their wishes, presumably for the “best interests” of the student, program, or both. A number graduated later than their cohort, but in the end, these individuals used their determination, drive, willpower, and passion for their subject matter to succeed despite the challenges. A small number did 99 make concessions due to their illnesses, Hawkes, for example, altered her goals and choose to not do her PhD as she had planned, while Jamison, recognized that medical school would not be a good fit for her given the symptoms of her disorder. Coping strategies were often seen as important in their journeys. Interestingly, some strategies were positive and helped them move towards their goals, others were less helpful (e.g., alcohol, drugs, or eating disorders), and some coping strategies could be interpret either positively or negatively depending on someone’s perspective. For example, many of the individuals were so driven to succeed, that they often studied at the exclusion of other activities including socializing, any extracurricular activities, and basic functions such as getting a full night’s sleep. North, for example, slept four hours a night in order to study for 18 hours a day, leaving only two hours for other activities. These behaviours did, at times, have negative repercussions on their illness, but they also helped them do exceptionally well in school. Further, several talked about exercising a lot and spending a great deal of energy trying to pass as “normal” by trying to avoid letting any of their symptoms seep through in public for fear of being stigmatized and experience discrimination. Given some of the experiences reported by the individuals in this study such fears were justified; however, hiding part of who they were did exact an emotional toll and for some, “coming out” about their illnesses in their autobiographies was a way to stop hiding and become more genuine and congruent. In this sample, education was a key requirement to attain their occupational goals and be successful for the vast majority of these individuals. All but a few of the individuals entered professions that required them to have advanced degrees such as lawyer, professor, librarian, and doctor. Additionally, for some, being good students 100 proved to be a source of identity that was much needed in a world that made them feel like outsiders. The individuals reported that their success was possible only with the support of some key individuals in their lives. Many found their families to be that source of support, others had friends, colleagues, or spiritual advisors that provided them with comfort. Another vital source of support reported by most individuals were professionals such as their doctors, counsellors, educators, and employers, that helped them more easily navigate their journeys. The ability of a faculty member, dean, or educational institution to make allowances for the special circumstances of these individuals made their journey possible. Doctors who believed in their clients allowed them to continue their educational pursuits despite being very ill and hospitalized were vital for some individuals, while some universities made allowances for missed school or poor grades as a result of the illness. Structural flexibility is also a key factor in the success of most of these individual. Becoming and being a doctor, professor, or lawyer requires long hours, hard work, and sacrifices that is challenging for anyone regardless of their mental health status. For these individuals, having an SMI made getting the work done on time difficult but the flexibility of working when they wanted and where they wanted (with the exception of teaching times and meetings) made it possible for them to be productive and take time when they were not well. This point is emphasized by the fact that those who had jobs in the private sector and found the structure and nature of this work impossible to navigate. Employers in the private sector have more freedom to dismiss an individual than in the public sector, due to factors such as higher unionization rates in the public sector as well 101 as features such as tenure found in academia, that provide an added layer of job protection. Jones’ experience is a good example; he was fired because he was not likable at a private sector law firm, but was kept on despite his similarly inappropriate behaviour, in his academic job. There were, however, limits to tolerating his conduct and his disclosure to his dean was done to avoid being disciplined or fired. In short, a combination of individuals-level factors (e.g., drive, willpower, and goals) and interpersonal (e.g., supports), and structural factors (e.g., nature and setting of work) made it possible for these individuals to beat the odds. The Connection Between Their Education and Profession and Their Mental Illness People make choices about what to study and what to do professionally for a variety of reasons. For most of the individuals in this study, having a mental illness was often identified as a key factor in these choices. Eight of the 13 individuals chose careers with a focus on mental illness (i.e., Gask, Hawkes, Jamison, Jones, Kennedy, North, Saks, and Simon). Four of these individuals (i.e., Gask, Jamison, Jones, and North) have carved careers focusing on mental illness. Saks, Jones, Jamison, Gask, and North all had academic positions and taught and wrote about mental health issues. Gask, Jamison, and North, worked as psychiatrists or psychologists. Others have used their passions for mental health issues, to advocate for better mental health legislation, in the case of Kennedy, engage in creative projects on mental health as Simon did, or write self-help books on the topic like Jiang. Some, like Gask and North, asserted that their experiences with mental illness made it easier for them to empathize with their clients. Simon was one of the few individuals that was explicit about engaging in a professional activity for personal 102 reasons: She was in search of her “tribe,” that is young successful people with bipolar disorder. Although Hawkes works in a lab studying schizophrenia, she noted that her professor is the one who finds it a benefit to have her there; she reported being uncertain about how she felt about it. In a broader sense, the professions found in this sample all share characteristics such as flexibility that have allowed people to negotiate their illnesses with employments. In the case of Jones and Cheney, the high-powered private sector careers did not offer them enough privacy and flexibility to allow them to have down times when they were ill: Both eventually found work that enabled them to do so. Limitations As with any research, this study had limitations. First, the focus was on a group of outliers that represented a very narrow range of successful individuals with an SMI. This sample was heavily skewed to academically-inclined individuals who worked in fields that require advanced levels of education. This narrow population did not allow for any generalizability to a larger population; however, this group allowed me to concentrate on the factors in their lives that contributed to their success and these factors are not unique to this group. A second limitation was the lack of control over the data. One of the problems with using secondary sources (i.e., published autobiographies) is not being able to ask questions and probe for more information when needed. Although the books provided a rich source of data, it would have been beneficial, in some cases, to be able to get more details on some issues. Another method such as face-to-face interviews would have 103 allowed me to seek elaborations and to pose a standard set of questions to each of the individuals. Future Directions Knowing how this sample of people with an SMI navigated the world of education and work successfully could provide important information for researchers seeking to understand how people could beat the odds. Despite reflecting a narrow minority of individuals with an SMI, these narratives made it possible to understand some of the factors that helped them succeed. Future research using interviews or focus groups would allow for a more fulsome explorations of some of the themes that emerged in the study. Another key avenue of research could include larger samples of individuals who have succeeded in various walks of life. For instance, a study on whether academics, doctors, lawyers, librarians, and journalists differ from captains of industry or celebrated artists would be worthwhile. For all those who wrote their stories, the intent was to address the stigma surrounding mental illness and also to show others that having an SMI is not equivalent to lowered educational and job prospects. For a few individuals in this study, reading accounts of these success stories gave them hope and led them to want to tell their own stories for similar reasons. It would be interesting to explore whether individuals with an SMI react to reading about these success stories and raises such questions as: Does learning about those who have succeeded change their views of themselves? their own illness?, or alter their educational and/or work goals? If so, in what ways? The answers to these questions could add to this study and other studies. 104 Relatedly, other questions include: do these examples change the attitudes of professionals working with this population? If they are more aware that the people with arguably the most severe mental illness, schizophrenia, can reach the highest echelon of education and careers, will their prognoses and interactions change? Could these stories change the attitudes of employers and counsellors? Again, answers could provide valuable insight for other researchers. Lessons for Mental Health Professionals The results of the study could provide lessons for mental health professionals. As discussed earlier, we all have biases that affect our work, and I hope that this study will provide a catalyst for considering whether these biases about mental illness and about those with serious mental illnesses influences their work. It is important to consider the possibility of either over- or under-estimating someone with an SMI as a result of the stigma we may have. In terms of over-estimation, it is possible that many individuals with an SMI may be overlooked because they do not appear to be ill. Many of the individuals in this sample worked hard at looking “normal” by dressing and acting as if they were not sick. Mental health assessments routinely focus on appearance and functioning (e.g., employment, education) or lack thereof, and many practitioners use these as markers of illness. Thus an employed person who presents as well-groomed and dressed well is more likely to be seen as well compared to period who is not. These markers are useful in assessing overall mental health, but they do make it possible to overlook someone who is quite ill as many in this sample were. One wonders if any one of the individuals in this study sought help today, one wonders how effectively a mental health professional could look past the 105 appearance of wellness and see the underlying mental illness or whether looking too “normal” could affect their judgement. At the other extreme, it is important not to under-estimate someone’s potential based on a given diagnosis. It is important for professionals to recognize that someone with an SMI can do extremely well academic and/or professionally. It is also important to recognize that for some individuals, education and work can be a coping mechanism as well as source of stress. Finally, successes such as these 13 individuals, and for many others, should be made visible to clients, professionals, as well as society to recognize that mental illness and success can be synonymous. 106 References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. (6th edition). Washington, DC: American Psychiatric Publishing. Arim, R. (2017). A profile of persons with disabilities among Canadians aged 15 years or older, 2012. (Catalogue no. 89-654-X). Ottawa, ON: Statistics Canada. Retrieved from: https://www150.statcan.gc.ca/n1/en/pub/89-654-x/89-654x2015001-eng.pdf?st=do6Y5ql7 Baldwin, M. L., & Marcus, S. C. (2007). Labor market outcomes of persons with mental disorders. Industrial Relations, 46(3), 481-510. doi: 10.1111/j.1468232x.2007.00478.x Baldwin, M. L., & Marcus, S. C. (2014). The impact of mental and substance-use disorders on employment transitions. Health Economics, 23, 332-344. doi: 10.1002/hec.2936 Ball, P., Monaco, G., Schmeling, J., Schwartz, H., & Blanck, P. (2005). Disability as diversity in Fortune 100 companies. Behavioral Science and the Law, 23, 97-121. doi: 10.1002/bsl.629 Beattie, B. (2017, August 29). All aboard, the bipolar express. The Globe and Mail. Retrieved from: https://www.theglobeandmail.com/life/facts-and-arguments/imfinally-out-of-the-mental-illness-closet-and-ive-never-feltmorefree/article36115714 Belkic, K., & Savic, C. (2013). Job stressors and mental health: A proactive clinical perspective. London, UK: World Scientific Bond G. R., Becker D. R., Drake R. E., Rapp, C. A., Meisler, N., Lehman A. F., … Blyler C. R. (2001). Implementing supported employment as an evidencebased practice. Psychiatric Services, 52: 313–322. doi: 10.1176/appi.ps.52.3.313 Bos, A. E. R., Kanner, D., Muris, P., Janssen, B. &, Mayer, B. (2009). Mental illness stigma and disclosure: Consequences of coming out. Issues in Mental Health Nursing, 30, 509-513. doi: 10.1080/01612840802601382 Brohan, E., Henderson, C., Wheat, K., Malcolm E., Clement, S., Barley, E. A., … Thornicroft, G. (2012). Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace. BMC Psychiatry, 12(11), 1-11. doi: 10.1186/1472-6963-10-80 107 Brouwers, E. P. M., Mathijssen, J., Van Bortel, T., Knifton, L., Wahlbeck, K., Van Audenhove, C., …the ASPEN/INDIGO Study Group. (2016). Discrimination in the workplace, reported by people with major depressive disorder: A crosssectional study in 35 countries. British Medical Journal. Retrieved from http://bmjopen.bmj.com/content/6/2/e009961 Burns, T., Catty, J., Becker, T., Drake, R. E., Fioritti, A., Knapp, M., ... Wiersma, D. (2007). The effectiveness of supported employment for people with severe mental illness: A randomized controlled trial. The Lancet, 370, 1146-1152. Retrieved from: http://80.74.159.236/fileadmin/drahtzug/downloads/berichte_aus_der_forschung/ Lancet_September_2007_Sieben_Seiten.pdf Brundrant, M. (2017, February 28). Best-selling author of 50 books reveals his amazing journey with schizophrenia. Retrieved from https://blogs.psychcentral.com/nlp/2017/02/will-jiang-author-schizophrenia/ Cavanaugh, J., Bartram, T., Meacham, H., Bigby, C., Oakman, J., & Fossey, E. (2017). Supporting workers with disabilities: A scoping review of the role of human resource management in contemporary organisations. Asia Pacific Journal of Human Resources, 55, 6-43. doi: 10.1111/1744-7941.12111 Carmona, V. R., Gomez-Benito, J., Huedo-Medina, T. B., & Rojo, J. E. (2017). Employment outcomes for people with schizophrenia spectrum disorder: A meta-analysis of randomized controlled trials. International Journal of Medical Environmental Health, 30 (3), 345-366. doi: 10.13075/ijomeh.1896.01074 Cheney, T. (2008). Manic: A memoir. New York, NY: William Morrow. Cheney, T. (2011). The dark side of innocence: Growing up bipolar. Toronto, ON: Atria Paperbacks. Cockburn, L., Krupa, T., Bickenbach, J., Kirsh, B., Gewurtz, R., Chan, P. & McClenaghan, M. (2006). Work and psychiatric disability in Canadian disability policy. Canadian Public Policy, 22(2), 197-211. Retrieved from: http://www.jstor.org/stable/4128728 Connidis, I. A. (2012). Interview and memoir: complementary narratives on the family ties of gay adults. Journal of Family Theory & Review, 4(2), 105 –121. doi: 10.1111/j.1756-2589.2012.00127 Cook, J. A. (2006). Employment barriers for persons with psychiatric disabilities: Update of a report for the president's commission. Psychiatric Services 57(10), 1391 – 1405. doi: 10.1176/ps.2—6.57.10.1991 108 Corrigan, P. W., Markowitz, F. E., Watson, A. C. (2004). Structural levels of mental illness stigma and discrimination. Schizophrenia Bulletin, 30(3), 481-491. Retrieved from: http://web.b.ebscohost.com.prxy.lib.unbc.ca/ehost/pdfviewer/ pdfviewer? vid=1&sid=47795ad4-8549-4769-a302a042ccee0792%40sessionmgr101 Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental illness. World Psychiatry: Official Journal of the World Psychiatric Association, 1(1), 16-22. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1489832/ Cotti, C. D., Haley, M. R., & Miller, L. A. (2017). Assessing the impact of different workplace flexibilities on workplace stress in the presence of varying degrees of job control. Applied Economic Letters, 24(3), 198-2012. doi: 10.1080/13504851.2016.1176108 Creswell, J. W. (2014). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks, CA: Sage Publications. Crowther, R. E., Marshall, M., Bond, G. R., & Huxley, P. (2001). Helping people with severe mental illness to obtain work: Systematic review. British Medical Journal, 322(7280), 204-208. doi: https://doi.org/10.1136/bmj.322.7280.204 Dabby, L., Tranulis, C., & Kirmayer, L. J. (2015). Explicit and implicit attitudes of Canadian psychiatrists toward people with mental illness. Canadian Journal of Psychiatry. 60(10), 451-459. doi: 10.1177/070674371506001006 Davey, G. C. (2014). Psychopathology: Research, assessment, and treatment in clinical Psychology. (2nd ed.). Toronto, ON: Wiley Dewa, C. S., & Hoch, J. S. (2014). When could a stigma program address mental illness in the workplace break even? Canadian Journal of Psychiatry, 59(10 Suppl 1), S34-S39. https://doi.org/10.1177/070674371405901S08 Dickerson, F., Boronow, J. J., Stallings, C., Origoni, A. E., Cole, S. K., & Yolken, R. H. (2004). Cognitive functioning in schizophrenia and bipolar disorder: Comparison of performance on the repeatable battery for the assessment of neuropsychological status. Psychiatric Research, 129(1), 45-53. doi: 10.1016/j.psychres.2004.07.002 Dolce, J. N., & Waynor, W. R. (2018). Effect of psychiatric symptoms of employment outcomes for individuals receiving supported employment security: A preliminary study. Journal of Psychosocial Nursing and Mental Health Services, 56(93), 3338. https: //doi.org/10.3928/02793695-20171027092 109 Ellison, M. L., Russinova, Z., Lyass, A., & Rogers, E. S. (2008). Professionals and managers with severe mental illnesses: Findings from a national survey. Journal of Nervous and Mental Disorders, 196(3), 179-189. doi: 10,.1097/NMS.ob013e318166303c Ellison, M. L., Russinova, Z., MacDonald-Wilson, K. L., & Lyass, A. (2003). Patterns and correlates of workplace disclosure among professional and managers with psychiatric conditions. Journal of Vocational Rehabilitation, 18(1), 3-13. Retrieved from: https://escholarship.umassmed.edu/psych_cmhsr/452 Ellison, M. L., Russinova, Z., Massaro, J., & Lyass, A. (2005). People with schizophrenia employed as professionals and managers: Initial evidence and exploration. Schizophrenia Research, 76, 123-125. doi: 10.1016/j.schres.2004.09.023 Frank, E., & Dingle, A. D. (1999). Self-reported depression and suicide attempts among U.S. women physicians. American Journal of Psychiatry, 156, 1887-1894. doi: 10.1176/ajp.156.12.1887 Fridner, A., Belkic, K., Marini, M., Minucci, D., Pavan, L. & Schenck-Gustafsson, K. (2009). Recent suicidal ideation among female university hospital physicians in Sweden and Italy (the HOUPE study): Cross-sectional associations with work stressors. Gender Medicine, 6, 314-348. doi: 10.1016/j.genm.2009.04.006 Fridner, A., Belkic, K., Minucci, D., Pavan, L., Marini, M., Pingel, B., & SchenckGustafsson, K. (2011). The work environment and recent suicidal thoughts among male university hospital physicians in Sweden and Italy (the HOUPE study). Gender Medicine, 8, 269-279. doi: 10.1016/J.genm.2011.05/009. Gask, L. (2015). The other side of silence: A psychiatrist’s memoir of depression. West Sussex, UK: Summerdale Publishers. Gladwell, M. (2011). Outliers: The story of success. Toronto, ON: Penguin books. Glozier, N. (1998). Workplace effects of the stigmatization of depression. Journal of Occupational Environmental Medicine, 40(9), 793-800. Retrieved from: https://journals.lww.com/joem/Abstract/1998/09000/Workplace_Effects_of_the_ Stigmatization_of.8.aspx Gowdy, E. A., Carlson, L. S., & Rapp, C. A. (2004). Organizational factors differentiating high performing from low supporting employment programs. Psychiatric Rehabilitation Journal, 28(2),150-156. Retrieved from: http://web.b.ebscohost.com.prxy.lib.unbc.ca/ehost/detail/detail?vid=0&sid= 74593616-ab4a-4560-a7c7-9b8af1805163%40sessionmgr 103&bdata= JnNpdGU9ZWhvc3QtbGl2ZSZzY29wZT1zaXRl#AN=2004-21341010&db=pdh 110 Hanisch, S. E., Twomey, C. D., Szeto, A. C., Birner, U. W., Nowak, D., & Sabariego, C. (2016). The effectiveness of interventions targeting the stigma of mental illness at the workplace: a systematic review. BMC Psychiatry, 16(1), 1-11. doi: 10.1186/s12888-015-0706-4 Hammen C., Gitlin M., & Altshuler L. (2000). Predictors of work adjustment in bipolar I patients: A naturalistic longitudinal follow-up. Journal of Consulting and Clinical Psychology, 68(2), 220–225. doi: 10.1-37/0022-006X.68.2.220 Hand, C., & Tryseenaar, J. (2006). Small business employers’ views on hiring individuals with mental illness. Psychiatric Rehabilitation Journal, 29(3), 166-173. Retrieved from: http://content.ebscohost.com.prxy.lib.unbc.ca/ ContentServer.asp? T=P&P=AN&K=2006-03146004&S=L&D=pdh&EbscoContent=dGJyMMvl7E SeprI4wtvhOLCmr0%2BeqK5SsKm4Ta6WxWXS&ContentCustomer=dGJyMP GrtE%2BwqLdLuePfgeyx44Dt6fIA Harder, H. G., Wagner, S. L., & Rash, J. A. (2014). Mental illness in the workplace: Psychological disability management. Burlington, VT: Gower Applied Business Research. Houtenville, A., & Kalargyrou, V. (2012). People with disabilities: Employers’ perspectives on recruitment practices, strategies, and challenges in leisure and hospitality. (2012). Cornell Hospitality Quarterly, 53(1), 40-52. doi: 101177/193896551424151 Hawkes, E. L. (2012). When quietness came: A neuroscientist’s personal journey with Schizophrenia. Dundas, ON: Bridgeross Communications. Jamison, K. R. (2011). An unquiet mind: A memoir of mood and madness. New York, NY: Vintage books. Jiang, William. (2010). A schizophrenic will: A story of madness, a story of hope. New York, NY: author. Jones, A. H. (1998). Mental illness made public: Ending the stigma? The Lancet, 352, 1060. doi: https://doi.org/10.1016/S0140-6736(98)08418-9 Jones, J. T. R. (2011). A hidden madness. San Bernadino, CA: Author. Jones, J. T. R. (2015). High functioning: Successful professionals with severe mental illness. Duke Forum for Law & Social Change, 7(1), 1-35. Retrieved from: https://pdfs.semanticscholar.org/fc42/da04222133509a78d8519e3dd3ea63f3d761. pdf 111 Kennedy, P.J., with Fried, S. (2015). A common struggle: A personal journey through the past and future of mental illness and addiction. New York, NY: Penguin Random House. Kirsh, B. (2000). Factors associated with employment for mental health consumers. Work, 53(2), 325-335. doi: 10.3233/WOR-152153. Kirsh, B. , Friedland, J., Cho, S., Gopalasuntharanathan, N. Orfus, S., Salkovitch, M., … Webber, C. (2015) Experiences of university students living with mental health problems: Interrelations between the self, the social, and the school. Work, 53(2), 325-335. doi: 10.3233/WOR-152153 Kirsh, B., Krupa, T., Cockburn, L., & Gerwurtz, R. (2010). A Canadian model of work integration for persons with mental illnesses. Disability Rehabilitation, 32(22), 1833-1946. doi: 10.2109/09638281003734391 Kitzrow, M. (2003). The mental health needs of today’s college students: Challenges and recommendations. NASPA Journal, 41(1), 165-179. Retrieved from: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.408.2605&rep=rep1&t ype=pdf Kosyluk, K.A., Corrigan, P. W., & Landis, R. S. (2014). Employer stigma as mediator between past and future hiring behavior. Rehabilitation Counseling Bulletin, 52(2), 102-108. doi: 10.1177/0034552I3496284 Krupa, T., Howell-Moneta, A., & Kirsh, B. (2016). Employer perceptions of the employability of workers in a social business. Psychiatric Rehabilitation Journal, 39(2), 120-128. doi: 10.1037/pjr0000181 Krupa, T., Kirsh, B., Cockburn, L., & Gewurtz, R. (2009). Understanding the stigma of mental illness in employment. Work, 33, 413-425. doi: 10.3222/WOR-2009-0890 Little, K., Henderson, C., Brohan, E., & Thornicroft, G. (2011). Employers’ attitudes to people with mental health problems in the workplace in Britain: Changes between 2006 and 2009. Epidemiology and Psychiatric Sciences, 20, 73-81. doi: 10.1017/S204579601100014X Luciano, A., & Meara, E. (2014). The employment status of people with mental illness: National survey data from 2009 and 2010. Psychiatric Service, 65(100), 12011209. doi: 10.1176/appi.ps.201300335 Lyons, C., Hopley, P., & Horrocks, J. (2009). A decade of stigma and discrimination in mental health: Plus ca change, plus c’est la meme chose (the more things change; the most they stay the same). Journal of Psychiatric Mental Health Nursing, 16(6), 501-507. doi: 10.1111/j.1365-2850.2009.01390.x 112 Manning, C., & White, P.D. (1995). Attitudes of employers to the mentally ill. Psychiatric Bulletin, 109, 541-543. doi: 10.1192/pb.19.9.541 Markoulakis, R., & Kirsh, B. (2013). Difficulties for university Students with mental health problems: A critical interpretive synthesis. The Review of Higher Education, 37(1), 77-100. doi.org/10.1353/rhe.2013.0073 Markowitz, F. E. (1998). The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness. Journal of Health and Social Behavior, 39, 335-347. doi: 10.2307/2676342 Martin, J. M. (2010). Stigma and student mental health in higher education. Higher Education Research & Development, 29(3), 259-274. https://doi.org/10.1080/0729430903470969 McCrohan, N. M., Mowbray, C. T., Bybee, D., & Harris, S. N. (1994). Employment histories and expectations of persons with psychiatric disorders. Rehabilitation Counseling Bulletin, 38(1), 59-71. https://doiorg.prxy.lib.unbc.ca/10.1007/BF02249367 McDowell, C., & Fossey, E. (2015). Workplace accommodations for people with mental illness: A scoping review. Journal of Occupational Rehabilitation, 25(1), 197206. doi: 10.1007/s10926-01409512-y McGurk, S. R., & Mueser, K. T. (2003). Cognitive functioning and employment in severe mental illness. Journal of Mental Disorder, 191(12), 789-798. doi: 10.1097/01.nmd.0000100921.31489.5a McTernan, W. P., Dollard, M. F., & LaMontagne, A .D. (2013). Depression in the workplace: An economic cost analysis of depression-related productivity loss attributable to job strain and bullying. Work & Stress, 27(4), 321-338. doi: 10.1080/02678373.2013.846948 Mechanic, D., Bilder, S., & McAlpine, D. D. (2002). Employing persons with serious mental illness. Health Affairs, 21(5), 242-369. Retrieved from: https://wwwhealthaffairs-org.prxy.lib.unbc.ca/doi/abs/10.1377/hlthaff.21.5.242 Megivern, D., Pellerito, S., & Mowbray, C. (2003). Barriers to higher education for individuals with psychiatric disabilities. Psychiatric Rehabilitation Journal, 26(3), 217-231. https://dx.doi.org/10.2975/26.2003.217.231 Metcalfe, J. D., Drake, R. E., & Bond, G. R. (2017). Predicting employment in the mental health treatment study: Do client factors matter? Administration Policy Mental Health, 44(3), 345-353. doi: 10.1007/s10488-016-0774-x 113 Nordt, C., Rossler, W., & Lauber, C. (2006). Attitudes of mental health professionals towards people with schizophrenia and major depression. Schizophrenia Bulletin, 32(4): 709-714. doi: 10.1093/schbul/sbj065 North, C. S. (1987). Welcome Silence. New York, NY: Simon and Shuster. O’Brien, M. R., & Clark, D. (2010). Use of unsolicited first-person written illness narrative in research: Systematic review. Journal of Advanced Nursing, 66(8), 1671-1681. doi: 10.1111/j.1365-2648.2010.05349 O'Day, B., Killeen M., & Goldberg S. (2006). Not just any job: People with psychiatric disabilities build careers. Journal of Vocational Behavior, 25, 119– 131. doi: 10.1186/1471-244X-12-11 Page, S., & Keady, J. (2010). Sharing stories: A meta-ethnographic analysis of 12 autobiographies written by people with dementia between 1989 and 2007. Aging and Society, 30, 511-526. doi: 10.1017/S0144686X0990365 Pillow, W. (2003). Confession-catharsis, or cure? Rethinking the use of reflexivity in qualitative research. International Journal of Qualitative Studies in Education, 16(2): 175-196. http://dx.doi.org/10.1080/0951839032000060635 Power, T., Jackson, D., Weaver, R., Wilkes, L., & Carter, B. (2012). Autobiography as genre for qualitative data: A reservoir of experience for nursing research. Collegian, 19, 3943. doi:10.1016/j.colegn.2011.09.001 Russinova, Z., Wewiorski, N. J., Lyass, A., Rogers, E. S., & Massano, J. M. (2002). Correlates of vocational recovery for persons with schizophrenia. International Review of Psychiatry, 14(4), 303-311. https://doi.org/10.1080/0954026021000016941 Saks, E. R. (2007). The centre cannot hold: My journey through madness. New York, NY: Hatcht books. Saldaña, J. (2013). The coding manual for qualitative researchers. (2nd ed.). Thousand Oaks, CA: Sage Publications. SAMHSA. (2016). Behind the term: Serious mental illness. Retrieved from https://nrepp.samhsa.gov/Docs/Literatures/Behind_the_Term_Serious%20%20Me ntal%20Illness.pdf Service, J. (2004). Workplace culture and mental health are interwoven. HealthcarePapers, 5(2), 72-73. doi:10.12927/hcpap.2004.16826 114 Shields, M. (2006). Stress and depression in the employed population. Health Reports, 17(4). (Catalogue 82-003). Ottawa, ON: Statistics Canada. Retrieved from: http://publications.gc.ca/collections/collection_2007/statcan/82-003-X/82003-XIE2006012.pdf Simon, L. (2002). Detour: My bipolar road trip in 4-D. New York, NY: Washington square. Smetanin, P., Stiff, D., Briante, C., Adair, C. E., Ahmad, S., & Khan, M. (2011). The life and economic impact of major mental illness in Canada: 2011 to 2041. RiskAnalytica, on behalf of the Mental Health Commission of Canada. Retrieved from: http://www.mentalhealthcommission.ca/sites/default/files/MHCC_Report_Base_Ca se_FINAL_ENG_0_0.pdf Statistics Canada. (2018). Unemployment rate, participation rate and employment rate by education attainment, annual. Table 14-0020-01. Retrieved from: https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1410002001&pickMember s%5B0%5D=1.1&pickMembers%5B1%5D=2.10&pickMembers%5B2%5D=4.1 &pickMembers%5B3%5D=5.3 Stephanidis, E. (2006). Personal account: Being rational. Schizophrenia Bulletin, 32(3), 422-423. https://doi-org.prxy.lib.unbc.ca/10.1093/schbul/sbj006 Stuart, H. (2006). Mental Illness and employment discrimination. Current Opinion in Psychiatry, 19(5), 522-526. doi: 10.1097/01.yco.0000238482.27270.5d Teasdale, E. L., & Deahl, R. J. (2007). Mental health and psychiatric disorders. In K. T. Palmer, R. A. F. Cox, & I. Brown (Eds.). Fitness for work: The medical aspects (4th ed., pp. 147-168). Toronto, ON: Oxford University. Thompson, T. (1995). The beast: A journey through depression. New York, NY: Diversion books. Thornicroft, G. (2009). Shunned: Discrimination against people with mental illness. New York, NY: Oxford University. Thornicroft, G., Brohan, E., Kassam, A., & Lewis-Holmes, E. (2008). Reducing stigma and discrimination: Candidate interventions. International Journal of Mental Health Systems, 2(3), 1-67. https://doi.org/10.1186/1752-4458-2-3 University of Northern British Columbia (UNBC, 2006). Policies and procedures. Research involving human subjects. Retrieved from https://www.unbc.ca/sites/default/files/sections/research/2006.09.20.researchinvol vinghumanparticipantspolicy.pdf 115 Villotti, P., Corbière, M., Fossey, E., Franccaroli, F., Lecomte, T., & Harvey, C. (2017). Work accommodations and natural supports for employees with severe mental illness in social businesses: An international comparison. Community Mental Health Journal, 53, 864-870. doi: 20.2007/210597-016-0068-5 Vonnegut, M. (1975). The Eden express. New York, NY: A laurel book. Vonnegut, M. (2010). Just like someone without mental illness only more so: A memoir. New York, NY: Delacorte. Wahl, O. F. (1999). Telling is risky business: Mental health consumers confront stigma. New Brunswick, NJ: Rutgers University. Wahl, O., & Aroesty-Cohen, E. (2010). Attitudes of mental health professionals about mental illness: A review of the recent relationship. Journal of Community Psychology, 38(1), 49-52. doi: 10.1002/jcop.20351 Williams, A. E., Fossey, E., Corbière, M., Paluch, T., & Harvey, C. (2016). Work participation for people with severe mental illnesses: An integrative review of factors impacting job tenure. Australian Occupational Therapy Journal, 63 (2), 6585. doi: 10.1111.1440-1630.12237 Wong, J. (2012). Out of the blue: A memoir of workplace depression, recovery, redemption, and, yes, happiness. Toronto, ON: Author. Young, E. (2009). Memoir: Rewriting the social construction of mental illness. Narrative Inquiry, 19(1), 52-68. doi: 10.1075/ni.19.1.04you 116 Appendix A Brief Biography of Each Writer Terri Cheney Cheney was born in Southern California in 1959. Her father was a real estate developer and her mother worked as a nurse. Cheney described her relationship with her family relationship as strained; her father doted on her, she antagonized her older brother, and she felt that her mother and she were in “competition” for her father’s affection and believed her mother resented her for it. She reported having had mood swings all her life and felt that “something [was] very, very wrong with me” since childhood (Cheney, 2011, p. 1). She has attempted suicide on numerous occasions during her life and the first attempt was at age 7 when she believed her father was going to leave because of the conflict with her mother. She has had many other suicide attempts in her past, as well as repeated hospitalizations, and a path of past relationships destroyed. She blames the “Black Beast”, “the monster that ruled over [her] and manipulated [her] moods” (p. 15). Despite a childhood of lows and highs, as a belief that she had childhood bipolar disorder, her diagnosis occurred at the age of 34 when she was formally diagnosed. At that time, she was a successful entertainment lawyer educated at UCLA and worked for a powerful law firm in Los Angeles, California. She continues to practice law and has published two bestselling books. She describes herself as an excellent student who strove to excel to get the approval of her father. She received top grades in high school and near perfect SAT scores. She went to Vassar as an undergraduate and did well enough to go to UCLA law 117 school upon graduating. Throughout her life, she missed a lot of school claiming to be too sick to go but she states that she sought to avoid people when the “Black Beast” was too powerful. She struggled at Vassar as well as at law school as she fell into long depressions during these periods. She cycled through many highs and lows over those years but did well enough to graduate with a law degree, passed the Bar, and got a prestigious job at an entertainment and copyright law firm in Beverly Hills. She continued to suffer from large mood swings and took advantage of the highs to be very productive. During her periods of mania, she did not eat or sleep but rather worked nonstop. These lasted up to 4 days and were always followed by a crash into depression where she would hide out in her office not answering the phone. Despite this, she was very successful at work and was promoted several times. She credits her success to her strong work ethics and ability to work very long hours. Her success did not equate to being happy. She was constantly being watched and assessed to see if she was “partner material” and felt that she had to hide her moods from others. She even paid for her own therapy appointments rather than using the company’s insurance for fear of being found out. Cheney did disclose her illness to a senior partner she was having an affair with and his reaction was to tell her in that the symptoms better be under control as he was relying on her and he needed her to continue being productive. She eventually decided to get off the fast track to avoid the stress of the high pressured 24/7 law firm. It was during this time that she took a 3-month leave of absence to undergo ECT treatment. During this period, she became psychotic and as a result, received the bipolar diagnosis. Find the right medication combination too a long time, but 118 eventually they found some that addressed her depression as well as kept her “just this side of manic” (2008, p. 90). She faced side effects from the medication that led her to faint due to low blood pressure, slur her words, and appear drunk. When she exhibited these side effects of the medication in public, she was arrested and jailed for what policed believed was being under the influence of illicit drugs. She still is susceptible to recurrent episodes of her illness in periods of stress and has found that over time it has become harder to hide her illness from others. She chose to go public with her story as she wanted to help others understand what having bipolar feels like. Going public for her was a way to get rid of the shame and secrecy that she held onto for so many years 119 Linda Gask Gask was born in the UK in 1955. Her mother was a housewife and her father worked at an amusement park managing one the rides. She has a younger brother with obsessive compulsive disorder (OCD). She reports a good relationship with her brother and father but states that she never got along with her mother. She describes her mother as not understanding her and continuously being disappointed in her. When family counselling was occurring to address her brother’s OCD, she refused to attend preferring to study. When she graduated from high school, she opted to attend school in Scotland, in part, to get away from her family. She was a good student in school and her initial career goal was to become a science teacher but changed her mind at the age of 15 when decided to become a doctor. She does not explain why she changed her mind. She reported experiencing high levels of anxiety as a student and found that creating detailed and comprehensive study schedules helped reduce her anxiety. She was anxious when the schedules were not followed and found herself re-doing them when this occurred. She did recognize that these were OCD-like tendencies she was demonstrating . She eventually decided to go into psychiatry after realizing that she would not make a good general practice doctor and recognizing that she seemed to do very well in her psychiatry rotation. She believes that growing up in a family like hers gave her a good ability to sense people’s moods and be empathic. She also noted that her personal psychological struggles with depression and anxiety made her a more understanding and compassionate professional. 120 After becoming a practicing psychiatrist, she continued her studies in patient-doctor communication and earned a PhD She has published many articles and books in her field. In terms of social relationships, she had some friends while going through medical school and married her first husband, a PhD student in physics, while still in her 4th year of medical school. They divorced after she had an affair with a colleague (a psychiatric nurse) who was also married. She reports being anxious most of her life and having difficulty with stressful situations (e.g., school and work). She was diagnosed with major depression in her 20s. She has acknowledged that she displays many traits of the borderline personality disorder (BPD) though has never received a formal diagnosis (Gask, 2016). 121 Erin Hawkes Hawkes was born in 1979 in New Brunswick. Her father was a physics professor at Mount Allison University. She does not mention her mother’s role. She has a younger sister whom she is close to. She reports having good family dynamics and does not describe her childhood beyond saying that she did very well at school, was socially awkward growing up, and had few friends. In terms of her illness, Hawkes states that she has been hearing voices as far back as age 5. When she was young, the voices were fairly benign but as she grew up, the voices became darker and more controlling in nature. When she was 22, during her last year of undergraduate studies, the voices told her that she should hang herself and reports feeling a compulsion to do so. This act scared her enough to seek medical attention. As a result, she went to the counselling services at school and found a counselor to work with. She was initially diagnosed with depression due to the suicide attempt but eventually this was changed to paranoid schizophrenia. This latter diagnosis emerged when she revealed that she heard voices. She also had many provisional diagnoses including Asperger’s (now called autism spectrum disorder), reactive attachment disorder, borderline personality disorder, dissociative personality disorder, bulimia, and obsessive personality disorder, but the final diagnosis is schizophrenia. Despite long hospitalizations and several psychotic breaks, Hawkes graduated with a near perfect grade point average and attended UBC supported by an NSSRC grant to complete a masters in science (MSc) degree. At the time, Hawkes was studying amyotrophic lateral sclerosis (ALS) but Hawkes subsequently enrolled in a PhD program under a new supervisor who studied schizophrenia. This shift was due in part to 122 dissatisfaction with her MSc supervisor and her growing interest in the topic. Despite receiving a generous scholarship to do her PhD, she realized that the medication she was on and the several psychotic episodes she experienced when she went off the medication resulted “cognitive deficits” that would make the task too daunting for her. She currently works as a neuroscientist in a laboratory at UBC that studies schizophrenia. Her supervisor welcomes having someone with the disorder working in his lab. Hawkes work part-time and enjoys contributing in research and publications that are generated in the lab. She has had two marriages, the first with a former client from a hospital stay which lasted a year, and the former continues to be a positive influence in her life. Hawkes now speaks out about her illness and published her story to help others understand what it is like to for someone who experiences the disorder but has achieved success. She wants to give “hope and inspiration” to those suffering with the illness by sending the message that “even if you are at times psychotic you still have a life to live” (2012, p. 107). 123 Kay R. Jamison A professor of psychiatry at Johns Hopkins University and author of five books, numerous academic articles, and a recipient of a MacArthur “genius” Fellowship. Jamison has a diagnosis of bipolar disorder. Although Jamison reports evidence of her disorder appearing when she was very young. That said, she received a diagnosis at the age of 34 after she had completed her schooling and getting her first tenure track job. Her father was a meteorologist in the U.S. Air Force that meant that she and her family moved around a great deal. She has two older siblings, a sister and a brother whom she is close to. Her mother was a homemaker and provided a supportive home environment. When she was a teenager, her father got a job in the private sector which led to a move to California. The move was difficult for Jamison and she reports increasing mood changes during this period, especially more manic episodes. She spent 2 years studying psychology at UCLA, 2 years in Scotland before returning to UCLA to finish her BA. During this period, 1968-1973, she worked as a research assistant in the laboratory of a professor and together they published a dozen articles. She entered graduate school in 1968 and earned her MA in 1971 (the same year she received her BA) and a Ph.D. in 1975 (Jamison, 2012). Despite being an expert in bipolar disorder, Jamison was in denial of her illness and refused to seek help. It was only when her job was on the line that she relented and sought assistance and medication. Like many people with bipolar, she frequently stopped taking her medication. She disliked the side effects and missed the productive manias and 124 was reluctant to lose these episodes. A very serious suicide attempt convinced her to remain medication compliant. 125 William Jiang Jiang was born in 1972 in New York, when his mother got pregnant for him while she was a graduate student. His father was a lawyer but was not present in his life. He was raised by his step-father and has an older step-brother and two younger half-brothers. As a child, he was academically precocious and skipped grades. He was selected to attend one of the best New York schools because of his grades. He applied to State University of New York (SUNY) and supported himself by working throughout his schooling as his parents could not afford to pay. He worked as both a tutor and a janitor from 11 pm to 3 am every night. Despite this, he took a heavy school load at school and did well. He described himself as “driven” and having a “positive can-do attitude.” Jiang was diagnosed with paranoid schizophrenia at the age of 19 while he was a university student, following a breakdown that lead to his first psychotic break. He did not like being on medication and he weaned himself off which lead to a second psychotic break 6 months later. Despite a second hospitalization a year later, Jiang graduated on time with good grades. He spent a few years after graduating in an outpatient treatment centre that provided a job training component. He found a part-time job selling t-shirts through the supported work program as he could not work in competitive work without losing his disability benefits as these benefits paid for his medication and doctor’s appointment. He decided to go back to school to get a Masters’ degree in Library Science. With a grant she was able to support himself without working. He opted to attend part-time and graduated in 3 years instead of 2. He used his new library computer skills to help build a website for 126 an organization that focused on mental health and was passionate about addressing the stigma surrounding mental illness. He subsequently took a position at a New York psychiatric facility as a specialized librarian. Jiang has since published many articles and six books including the autobiography. He wrote his book because it is a way for him to provide advice for others with mental illness to navigate school and illness as well as to advocate for those with mental illness and address the stigma by making his illness and success public. 127 James T. R. Jones Jones was born in 1953 in Virginia. His father was a chartered accountant and his mother was a homemaker. He had one brother, who is 5 years older. He expressed a lot of anger towards his parents making him feel like there was always something wrong with him and for forcing him to dress in a way that made him stand out in school. He believes that this resulted in his being ridiculed and bullied and he blamed his parents for putting him in this situation. He reported being socially awkward and being a loner throughout out school. His stress was expressed in anxiety and stomach problems and was diagnosed with an ulcer at age 15. He demonstrated volatility and irritability most of his life that has resulted in his lashing out at people leading to problems with social interactions. He was initially diagnosed with depression at the age of 26. Four years later he had a breakdown leading to a psychotic episode: it was at this point that he received a diagnosis of bipolar disorder. He would be hospitalized on four other occasions over the course of 24 years. As a student, he graduated at top of his class and was admitted to Duke law school. Despite finding school very stressful that lead to “severe anxiety and depression”, his grades were excellent. He noted that he succeeded as a result as “sheer stubbornness” and hard work or what he calls “incessant studying.” Despite his academic success, Jones did not do well socially. Faculty treated him as special, but he did not make friends. His social deficits were demonstrated in getting many interviews for summer law firm jobs. He landed his first summer job when his father arranged it using his contacts. He managed to work throughout the summer but the first refused to hire him back as was typically the case and he was never able to work in 128 his own town again. At graduation he received many interviews with very few offers. He attributes this outcome as a result of his personality and/or his mental illness. He did get two jobs offers, both in New York, and took one of these. He stated that he did “high quality” work but his interpersonal interactions skills led to his being asked to find otherwise as he did not get along with others. He was fired because people did not like him at work. It was at this point that decided that that he would do better in the public sector and tried to find work at a university given his past success as a student. He found getting interviews and offers was as challenging as it was in the private sector, but eventually he was given a term position after a telephone interview. This led to an eventual tenure track position at the University of Louisville. His interpersonal deficits led to problems interacting with his Dean, his colleagues, and students but despite this, he kept his job. After a particularly bad episode where his frustration resulted in his publicly berating a student and being aggressive to a colleague who tried to intervene, he believed is job was on the line and it was at this point that he disclosed his illness to the Dean. Due to this disclosure, or having tenure, or a combination, he did not lose his job. Following this disclosure, he decided to publish an article in a law journal talking about his bipolar and mental illness in the law. He had read a few autobiographies (i.e., Jamison and Saks) and believed he should add to this body of work by writing his own. He subsequently wrote several articles on mental illness and has spoken publicly on the topics. 129 Patrick Kennedy Kennedy is a former American congressman who served for 16 years and heads two organizations committed to researching mental illness and addressing the stigma attached to it. He was born in 1967 in Massachusetts. He is the son of the late Senator Ted Kennedy and his mother, who was a housewife. He has two siblings, a brother and sister. Kennedy has a diagnosis of bipolar disorder as well as substance-related disorder. He has abused alcohol and other substances since he was a teenager. He notes that his family is notoriously private and tends to not face problems head on. Both his parents suffered from mental health issues: His mother was an alcoholic and he believes his father suffered from post-traumatic stress disorder (PTSD) after witnessing two brothers being killed. Kennedy states that he has faced mental health challenges since he was a young person but his family described these as symptom of his asthma. When he got older, any changes in his behaviour was attributed to a car accident where he suffered head trauma. Kennedy describes these types of interpretations as the “usual Kennedy way” of minimizing problems. Despite his family’s inability to see the changes in his behaviour, he noted that his mood changes were apparent quite early. In his mid-teens his experience of his periods of “hypo-mania” that he enjoyed as he was able to be more productive. He stated that these periods became a way to compensate for unproductive times when he was depressed. He did go to a psychologist when his parents divorced but did not disclose much fearing the “Kennedy secrets” may be divulged. He did attend a rehabilitation centre for 10 days as a teen and found a “sobriety coach.” Despite this, he started using 130 drugs again. His drug addiction led him to pull out of Georgetown university a few months later. He eventually finished his degree at a local college. His first diagnosis was depression and he was given an antidepressant, and also began to see a psychiatrist. Throughout this period he continued to abuse substances including alcohol. In his third year of college, he was elected to public office. The added stress of being a student and a new politician made his mental health worse. He began to abuse pain medication and tried to mask his growing anxiety. In the year 2000, he came out publicly during a speech on mental health. His personal “outing” was not premeditated and he attributes it to his worsening condition: He was not well and felt he was “unravelling.” It was a car accident near the White House that forced his hand and as a result, he went for treatment at the Mayo Clinic. Despite the clear mental health issues he was dealing with, he was admitted to the medical ward to avoid anyone finding out his problem was not physical. The public was told he was in the hospital to deal with “back pain.” Nonetheless, it was during this admission that he finally received diagnoses and treatment for bipolar, substance use, and anxiety disorders. He used his professional position as well as his family name to support mental health. For much of his public career, he focused his attention on passing legislation for various health care reforms including the Mental Health Parity Act. After leaving office, he founded “the Kennedy Forum,” an organization that seeks to address mental health and brain research as well as “One Mind” that focuses on research in this area. He also teaches occasionally at Brown University on the topic of mental health policy. 131 Carol S. North North was born in a small midwestern town in the U.S. in the 1950s. Her father was a chemical engineer and her mother was a housewife. She has 3 older brothers. She stated that her home life was a good one and her family provided her with love and support throughout her life. She reported having symptoms of schizophrenia such as visual and auditory hallucinations most of her life. The symptoms became noticeable after their family home caught fire when she was 6. Her inability to sleep in her room and her reports of seeing ghosts in her room led a visit with a child psychologist who believed she was simply attention seeking. Their family doctor put her on reward schedule where 30 days of reporting to her mother that she was not scared would result in getting a new bike. She stated she got a new bike and learned to keep her hallucinations and fears to herself. Growing up she felt like a “misfit” a she was socially behind her peers but intellectually far ahead. She had few friends but excelled at school. She eventually found solace in religion that believed that the spirit spoke to them and that possession was possible. These ideas blended with her voices and she began to believe she could find salvation in being pure of heart. He passion with religion ended while she was still in high school. Her later flirtation with drugs seemed to intensify the voices and her distorted perceptions. She stated working hard to be part of the “normal” world by trying strategies to keep the voices at bay such as telling herself they were not real. This became more difficult as the voices got louder. 132 While at university, her focus was studying at the exclusion of any other activity including sleep: she studied 18 hours a day. Her symptoms got worse but she worked at trying to distract herself by studying. Despite this the voices got louder and her visual hallucinations increased. She spent more and more time staying in bed not moving focusing on her visual hallucinations. She was taken to the hospital and was diagnosed with catatonic schizophrenia. She was told at that time that her prognosis was grim and that she would likely not get any better. The medication they gave her helped and she kept pressing them to allow her to go to school. They relented. She studied in the hospital when she was not in class. Her approach to the symptoms of her disorder, side effects of the medication, and subsequent hospitalization was to work harder. She believed that she could compensate from what she called her “deficits” by grit and determination. She graduated with top grades and applied for medical school. She did very well on the exams and her grades were excellent. The application did ask if she had a psychiatric illness but rather than putting schizophrenic, she put the term “adjustment disorder” as it carried less stigma. It was good enough to get accepted to medical school. She continued her grueling study method, drank a lot of coffee, took caffeine pills, stopped therapy, and broke up with her boyfriend, to free up time to study. After a hospitalization in her second year, she had to take a leave. When she got better the school refused to reinstate her because of the illness and she had to struggle to find a new medical school to take her. Luckily she did and successfully completed medical school. During her hospital rotations she found psychiatry fascinating became a psychiatrist. 133 She states that her purpose for writing the book was to provide hope and encouragement for others with the same diagnoses. North argues that she was “cured” of schizophrenia as a result of a process of kidney dialysis and believes it is important for others to recognize that schizophrenia need not be a life sentence. 134 Elyn Saks A lawyer trained at Yale University and is currently an associate Dean and professor of law, psychology and psychiatry at University of Southern California (USC). She grew up in Florida where her father was a lawyer and her mother a homemaker. She has two brothers and describes her home life as supportive and affectionate. She is the winner to a MacArthur “genius” Fellowship and has published five books and more than 50 academic articles. She notes that there were “quirks” in her behaviour as young as 8 such as rituals to be performed to avoid something bad from happening and believing strangers lurked at her window. She experienced symptoms of her diagnosed schizophrenia during her first year of university: These included ignoring her hygiene or acting impulsively such as swallowing a bottle of aspirin while showing off. At first these symptoms did not last long but they increased in length and frequency but noted that the structure of school and the focus on studying helped keep the symptoms at bay. During the summer, she began to decompress; “I just couldn’t get my mind to work right” (2015, p. 42). She continued to have moments of being “too loud, too out-of-control, and taking stupid dares, doing stupid things” ( p. 46). Despites these moments, she was able to study and excel academically. She was offered a Marshall scholarship to do a graduate degree at Oxford University following her graduation and it was in England that she was first hospitalized. Her hallucinations became more vivid and she was no longer able to determine what was real or not, it became harder for her to speak and to study. She initially went to the hospital as a day patient and slept at home. As she got worse and the doctors convinced her to take antidepressants thinking she was clinically depressed. She was subsequently 135 admitted her as an inpatient. She responded well to the antidepressant and started to study again. Eight months after the first hospitalization she was readmitted and was there for 4 months. As a condition of her discharged was that she attend psychoanalysis on a daily basis. She completed her graduate degree in philosophy and decided that this topic held too many bad memories. She did develop an interest in psychology and law. She stated that as she read case studies on involuntary commitments she could personality relate to the experiences and felt she could play “a role…in the lives of people who suffered in a way that I understood only too well” (p. 103). Despite her disorder and numerous hospitalizations, Saks graduated from Vanderbilt, Oxford, and Yale Universities. She holds a law degree as well as a PhD in psychoanalytic science. 136 Lizzie Simon Simon was diagnosed with bipolar in her late teens. She reports a history of mental health problems including past suicide attempts and dark moods. She did see therapists when she was young due to large mood swings. Her first episode of mania and psychosis occurred at age 17 when she was in Paris studying abroad for her last year of high school. The people she was staying with, friends of her parents, assumed she was simply anxious and sent her home on the plane for Christmas. Over the holiday season she got very depressed and her family took her to a therapist and she was given medication, an antidepressant, and cared for at home by her family. She returned to Paris with a promise that she would continue her medication and go see a therapist. She did not do the latter but did stay on her medication. Unfortunately, she quickly became manic and psychotic. She discontinued her medication and the family she was staying with sent her back to the U.S. unaccompanied despite her psychotic state. At some point during the flight she tried to open the plane’s emergency door, believed rats had walked on her food and that there were cameras in the bathroom broadcasting to the other passengers. When she landed she was not brought to the hospital, but saw a doctor that diagnosed her and was given a prescription for Lithium and went home to heal. The medication worked quickly for her but the side effects were significant and included headaches, acne, shakes and significant weight gain. Additionally, she was concerned as she felt taking lithium made her “crazy”: I imagined zombies in loony bins” (2002, p. 22). Two weeks after returning to the U.S., she went back to her old high school in the U.S.. She did not feel like she was ready but her parents insisted. The school did reduce 137 her workload and gave her free periods to allow her transition back. For the next 6 months, Simon notes that she self-medicated with marijuana smoking 6 times a day. Her parents wanted her to move on and get past this episode. Simon went to Columbia that fall with the belief that “if I can achieve success, then I will feel ok” (p. 28). She studied hard and found an academic mentor in her 2nd year that helped motivate her. She described herself as the kind of person who gets “completely devoted” to activities. In addition to school, she also dove into radio. In her words “I went gonzo” (p. 31). After graduation, she got hired as an art director for a theatre company and put as much time and energy in her job as she did at school. In terms of stigma, Simon’s ideas of taking Lithium was tinged with a notion of “crazy.” Further, she was careful not to disclose her illness to anyone but a few people she was close to. She did a turnaround on disclosure a few years after graduation. After seeing a poster about mental illness on the subway, she decided to be an ambassador for young people and wanted “to produce a new image for bipolar people.” (p. 41). She suggests that she became “preoccupied with these ideas, my brain racing, persistently creating a mini-religion” (p. 41). She decided to go on a road trip to talk to young people like her about being bipolar that she described a trying to find her “herd.” This trip lasted 6 weeks and despite her hope to find her herd, she did not find it. The trip was stressful for her and she found it too hard to sleep, she was not eating properly, and was riddled with anxiety and panic attacks. She did find the experience valuable and out of the trip, she wrote her book as well as worked on a companion documentary. She currently works as a journalist for The Wall Street Journal. 138 Tracey Thompson Thompson was born in 1955 in Atlanta, Georgia to a father who worked for Delta airlines in the cargo department. After receiving a law school through night school. After graduating, he got a management job. She describes her father as “volatile”; sometimes he doted on her and other times he went into rages. Her mother stayed home and provided her with unconditional love. She has a sister who was two years older. Both sisters were in a serious accident as teenagers that left Thompson with facial scars that has made her self-conscious. She was a very good student and went to Emory University as an undergraduate and eventually went to Yale law school for her Master’s degree. In terms of career ambition, she writes that she has always wanted to be a writer and journalism seemed to be a good profession. She worked for the Atlanta Journal-Constitution for 15 years and then 7 years for the Washington Post. She has won a number of awards including being nominated a Pulitzer prize. She argues that she has always felt different from the other children. Despite this she did well academically and socially. Her “dark feelings” accompanying depression came at a young age. Outwardly, she showed a different portrait. She was at the top of the class academically and received many academic honours. She fell in a clique of studious kids she described as “geeks and nerds.” College was challenging but she found solace in studying and doing well. Here sense of self-esteem was connected to academic achievement and she saw not getting a perfect grade point average was a failure. She has a diagnosis of severe depression that she believes she has experienced since a trauma she experienced as a young teenage girl. She has had multiple 139 hospitalizations, suicidal attempts and post-partum depression that lead to a psychotic break. She spent many years abusing alcohol as a way to cope. She is currently following health regimen that includes not drinking, staying med compliant, and being able to address triggers quickly when they appear, that enables her to stay stable. She decided to write her memoir both because she is a writer by profession and wanted to address the stigma of mental illness. She knew many journalists who had writing about their physical illnesses and recognized that there was a stigma against disclosing a mental illness. She wanted to write a first-person account of her depression for her newspaper. Many of her friends and colleagues, worrying about the potential negative repercussions of doing so, but she felt the need to address the stigma despite the potential negative repercussion. She wanted people to see mental illness as a medical problem and that many successful people are afflicted too. She received a lot of positive feedback and eventually wrote a book-length autobiography. 140 Mark Vonnegut Son of author Kurt Vonnegut, Vonnegut is a Harvard-trained pediatrician who was initially diagnosed with schizophrenia in his 20s after experiencing several psychotic breaks. He experienced his first psychotic break after graduation from college. At the time he was living off the land in a commune in British Columbia. Since then he has had many hospitalizations. His last psychotic break occurred after he completed medical school. Vonnegut was born in 1947 in Cape Cod. His father was a writer who reached “success” only after Mark was an adult and had left home. His childhood years were spent in isolation from others and describes his parents as slightly broken self-absorbed parents but kind. He describes his mother as “a little bit nutty” and who also heard voices. When he told his mother he too was hearing voices her advice was “just go along with it. He experienced suicidal ideations at age 10. He has two younger sisters and they all grew up with four cousins who were orphaned. He has been writing about his mental illness since his early twenties and has published in national magazines as having written two books. Part of his goal for writing his first book was to make money as well as to end stigma. His early disclosure did results in some stigma when he was enrolled in medical school. He reported that the Harvard had received letters from alumni who were very upset about his admission. On a more positive note, he royalties from the book earned him enough money to pay for medical school in full and purchase a house. During a rotation, a surgeon informed him that he was aware of his diagnosis but he was going to treat him as if he “were normal.” He also faced some challenges 141 renewing his medical license because the board had questions about his illness. He was coached about how to answer the questions to pass. He has had a successful career as a pediatrician although he notes that the side effect of the medication gives him shaky hands and others. He stated that his illness was advantageous for applying to medical school as it gave him what he describes as the delusional “contagious optimism” he needed to believe that he would be a good doctor and should apply to medical school. Some of the application forms did ask about mental illness but he notes that the questions were vague enough that he could find an appropriate answer. He reported that he did very well in medical school but the long hours (100 plus hours weeks) and the stress affected his ability to sleeps and turned to prescription sleeping pills and alcohol to cope. He experienced a third psychotic break after graduating and was able to wean himself over the drugs and alcohol. It took him 30 years to publish his second book because of the stigma he had experienced while in medical school. At the time of his writing the second book, he was married with children and still working as a pediatrician. 142 Jan Wong Wong is an award-winning journalist, author of five books, and adjunct professor. She holds a Master’s degree in journalism from Columbia University as well as two undergraduate degrees, one from Canada and the other from China. She born and raised in Montreal where her parents ran a Chinese restaurant. She has one younger sister whom she gets along with who also lives in Montreal. Wong lives in Toronto where she worked as a reporter for The Globe and Mail until she was fired as a result of the events surrounding her mental illness. Wong was diagnosed with major depressive disorder in 2006 that resulted in 2 years of disability leave from work in her 50s. The MDD proceeded an incident at work where she reported a story of a school shooting in Montréal and suggested in her article that the fact that the past mass school shootings had been committed by immigrants and suggested that the culture in the province may have had something to do with it. The vociferous outcry from politicians and the public lead to her publisher not backing as they typically do when articles are published. Wong stated that she has received a number of death threats in the past but these were different as they aimed not only at her but her family and focused on her race as well. She did note that the hardest part was the way her employer and the insurance carrier treated her. In the past, she had “unwavering support” from the paper (2012, p. 45) but this time, her employer and the carrier believed she was malingering and that she needed to return to work. Despite the fact that her doctor was adamant that she needed to be on leave for depression, they did not believe her. Part of the problem, is that she was able to write for herself and work on a book but could not do so at work. The behaviours of the employer exacerbated the situation. 143 Wong describes several reason for writing her book. First, she stated that she wanted to describe what it is like for have MDD and to demonstrate that recovery was possible. Second, she revealed that the act of putting her story on paper enabled her to process her experiences and “purge this terrible period from my brain. I can now stop ruminating about it, over and over again” (p. 250). 144