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'It's something that I manage but it is not who I am': reflections on internalized stigma in individuals with bipolar disorder
Erin Michalak, James D Livingston, Rachelle Hole, Melinda Suto, Sandra Hale and Candace Haddock Chronic Illness 2011 7: 209 originally published online 28 February 2011 DOI: 10.1177/1742395310395959 The online version of this article can be found at: http://chi.sagepub.com/content/7/3/209

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Article

Its something that I manage but it is not who I am: reflections on internalized stigma in individuals with bipolar disorder
Erin Michalak1, James D Livingston2, Rachelle Hole3, Melinda Suto4, Sandra Hale5 and Candace Haddock6

Chronic Illness 7(3) 209224 ! The Author(s) 2011 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1742395310395959 chi.sagepub.com

Abstract Bipolar disorder (BD) is a complex chronic condition associated with substantial costs, both at a personal and societal level. Growing research indicates that experiences with stigma may play a significant role in contributing to the distress, disability, and poor quality of life (QoL) often experienced in people with BD. Here, we present a sub-set of findings from a qualitative study of self-management strategies utilized by high functioning Canadian individuals with BD. Specifically, we describe a theme relating to participants experiences and understandings of internalized stigma. Descriptive qualitative methods were used including purposeful sampling and thematic analysis. High functioning individuals with BD type I or II (N 32) completed quantitative scales to assess symptoms, functioning and QoL, and participated in an individual interview or focus group to discuss the self-management strategies that they use to maintain or regain wellness. Thematic analysis identified several themes, including one relating to internalized stigma. Within this, four additional themes were identified: stigma expectations and experiences, sense of self/identity, judicious disclosure, and moving beyond internalised stigma. One of the more unique aspects of the study is that it involves a participant sample that is managing well with their illness, which differs from the norm in biomedical research that typically focuses on pathology, problems and dysfunction.

Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada 2 BC Mental Health and Addiction Services, Port Coquitlam, BC, Canada 3 Faculty of Health and Social Development, University of British Columbia, Kelowna, BC, Canada 4 Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC, Canada

Rehabilitation Sciences, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada 6 Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada Corresponding author: Erin Michalak, Department of Psychiatry, University of British Columbia, 2255 Wesbrook Mall, Vancouver, BC, Canada V6T 2A1 Email: erin.michalak@ubc.ca

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210 Keywords Bipolar disorder, stigma, qualitative methods, functioning, self-management

Received 3 December 2010; accepted 4 December 2010

Chronic Illness 7(3)

Introduction
People with mental illness often have to endure negative life experiences due to the symptoms of their condition and face decits in functioning and quality of life (QoL). In addition, they may also have to struggle with the negative attitudes and behaviours that society, and they themselves, hold regarding mental illness. Stigma is a complex, multifaceted social process that consists of labelling, stereotyping, separation, status loss, and discrimination that co-occur in a power dierential.1 Three levels of stigma identied within the research literature consist of public, structural and internalized stigma. Public stigma refers to the phenomenon of large social groups endorsing stereotypes about mental illness and acting against individuals who are labelled mentally ill.2 Structural stigma refers to institutional policies and practicesthe structures that surround a personthat create inequality by restricting opportunities for people with mental illness.3,4 Internalized stigma refers to a subjective process, embedded within a socio-cultural context, which may be characterized by negative feelings (about self), maladaptive behaviour, identity transformation, or stereotype endorsement resulting from an individuals experiences, perceptions, or anticipation of negative social reactions on the basis of their mental illness.1,57 The concept of internalized stigma is central to the understanding of the psychological harm that is produced by stigma.8,9 Bipolar disorder (BD) is a complex chronic mental illness characterized by recurrent episodes of depression and elated mood.10 BD type I is characterized by recurring episodes of depression and mania (a distinct period of abnormally elevated,

expansive or irritable mood), while BD type II is characterized by depression and hypomania (the subsyndromal counterpart to mania). Research into BD has historically focused upon the biological and genetic causes of the condition, and pharmacological approaches to its treatment. Research into psychosocial factors in BD has been relatively slow on the uptake compared to corresponding research into other forms of mental illness, such as unipolar depression or schizophrenia. However, it is now recognized that psychosocial factors have a signicant impact upon how the condition manifests with a range of psychological, social, and family factors being implicated in the onset and course of BD (for example).1114 Further, there is growing evidence that psychosocial interventions improve outcomes in BD.15 Research into the role of one psychosocial factor in particularstigmahas also been slow on the uptake in relation to mood disorders,1618 but existing studies have revealed that, like other psychiatric illnesses, BD is a profoundly stigmatizing condition1923 and that stigma is a common experience in both people with BD and their caregivers.19,2426 Research also indicates that internalized stigma can have profound implications for behaviours and outcomes in aected individuals. For example, a study of 200 individuals with either a diagnosis or signicant family history of BD found that those with heightened perceptions of stigma described themselves as signicantly less willing to have children.19 Another study of people with BD (N 264) revealed that those with strong concerns about stigma during the acute phase of their illness exhibited greater impairment in subsequent social and leisure functioning, even after symptom severity, baseline social

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Michalak et al. adaptation, and sociodemographic characteristics were controlled for.27 In addition to these quantitative investigations, a small number of qualitative studies have highlighted the potential inuence of internalized stigma on subjective experiences. Stigma experiences were described by all participants in a study of depressed individuals with rapid-cycling BD (N 19).21 Participants described employing strategies for selectively disclosing their diagnosis, sometimes going to lengths to conceal their diagnosis and the fact that they were taking psychiatric medications. In another qualitative study, Australians with BD (type I) described their struggles with feelings of isolation, rejection, and workplace stigma.23 Recently diagnosed individuals with BD (N 26) participating in an Internet-based study described their loss of a sense of self, uncertainty about the future, and stigma as major diculties that they faced following their diagnosis.28 Our own qualitative research has revealed that individuals occupying dierent roles in relation to BD (those who experience BD, care for persons with BD, or are experts in treating BD) all identied stigma and discrimination as factors that can profoundly impact QoL20 and workplace functioning for people in this population.22 In summary, there are preliminary quantitative and qualitative ndings indicating that stigma can play an important role in the expression and experience of BD. In this article, we seek to advance this literature by reporting on qualitative ndings from a study examining the self-management strategies used by high functioning individuals with BD. Our rationale for focusing upon individuals who are living well with BD was threefold. First, we wanted to diverge from the traditional stance of BD researchwhich historically has focused on pathology and dysfunctionby adopting a strengthsbased approach. Second, we were cognisant from our QoL research20 in this area that some people with BD do learn to live well

211 with this chronic health condition and experience good QoL; we believed that it was important to give voice to the positive wellbeing strategies found eective by these individuals. Third, focusing on this group holds the potential to provide insights into experiences at a dierent point in the recovery timeline; people who are functioning well with a chronic illness may, for example, be addressing issues related to social identity and that are situated primarily outside of the medical system. This contrasts with research with severely ill individuals whose experiences are often overwhelmed with symptoms and medication side-eects, and whose lives are immersed within the medical system. Data from the participant sample were analysed to identify ve themes regarding wellness in BD: (1) taking care of myself: self-management strategies for BD;29,30 (2) accepting BD, not being dened by it; (3) social support; (4) focus on personal growth; and (5) stigma. The objective of this article is to focus in depth upon the last of these themes: experiences and understandings of stigma from the perspective of individuals who are functioning well with BD.

Methods Methodological approach

The study was carried out using descriptive qualitative methods.31,32 Qualitative description is a research method based on the general tenets of naturalistic inquiry with the purpose of providing a description and summary of the phenomenon/experience being studied.32,33 Design features include purposeful sampling, interviews and/or focus group interviews, and qualitative data analysis strategies (such as content analysis or thematic analysis). As such, qualitative description is a well-suited method for this research which is aimed at exploring and describing the meaning and experience of stigma for participants living

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212 with BD. Thematic analysis34 was used as the analytic framework for identifying themes in the current data set. Ethical approval for the study was granted by the UBC Behavioural Research Ethics Board committee.

Chronic Illness 7(3) domains. The MSIF has been validated for assessing functioning and disability in BD.48

Inclusion criteria
Participants were required to be 19 years of age or older, be uent in English, have a global score of 1 or 2 on the MSIF (no or very mild disability), and not be in an episode of illness that would render participation in a qualitative interview or focus group dicult (e.g., severe depression or orid mania). Individuals who were experiencing a mood episode but were still functioning well remained eligible for participation, as we believed that important insights into self-management strategies for BD would be gained by including those who maintained their functional status despite high symptom burden.

Recruitment
Guiding factors that determined study sample size included the scope, intent of the study (an in-depth exploration of the experiential nature of living well with BD types I and II), and the literature using descriptive qualitative methods.3537 A review of the research using descriptive qualitative methods revealed frequent sample sizes of between 10 and 20 participants (e.g.,3844). Although our initial recruitment strategies yielded a sample size commensurate with qualitative description, it did not reect the experiences of individuals with BD type II. Purposeful sampling45 was therefore subsequently used to selectively recruit for male participants and individuals with BD type II yielding a nal sample size of 32. Participants were recruited by distributing advertisements throughout British Columbia, Canada via a range of methods, including newsletters of local non-prot mental health organizations, newspapers, public lectures and education events, and online resources. The advertisement asked that people with a diagnosis of BD type I or II who felt that they were functioning well to contact the research team.

Quantitative methods
Upon consenting to participate in the research, participants were asked to complete several self-report and clinicianadministered scales. The primary purpose of this article is to describe the qualitative experiences of participants; therefore, the quantitative data are outlined in Table 1 for the sole purpose of describing the sample. The importance of stigma was not ascertained until the analysis phase of the study; consequently, quantitative scales of internalized stigma were not administered.

Qualitative methods
Following completion of the quantitative assessment scales, participants self-selected either an individual interview or a focus group to discuss the self-management strategies they employed in relation to their BD. Our rationale for allowing participants to choose between an interview or focus group involved recruitment considerations and our approach to data analysis. We believed that

Screening
Potential participants were screened by telephone for inclusion with the MINI International Neuropsychiatric Interview46 to conrm diagnosis of BD and with the Multidimensional Scale of Independent Functioning (MSIF)47 to assess functioning across work, residential, and educational

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Michalak et al.
Table 1. Demographic and clinical characteristics (N 32) Variable Sex Females, N (%) Male, N (%) Type Bipolar I, N (%) Bipolar II, N (%) Age, mean years (SD) Ethnicity Caucasian Indo-Canadian First nations Asian Not applicable Other Depressive episodes, mean # (SD) Manic episodes, mean # (SD) Hospitalisations, mean # (SD) Hamilton Depression Rating Scale, mean score (SD) Young Mania Rating Scale, mean score (SD) Quality of Life Enjoyment and Satisfaction Scale Physical Health domain, % max score (SD) General Feeling domain, % max score (SD) Work domain, % max score (SD) Household Duties domain, % max score (SD) School/Coursework domain, % max score (SD) Leisure Time Activities domain, % max score (SD) Social domain, % max score (SD) OverallGeneral domain, % max score (SD) Satisfaction with medication, median (range) Overall life satisfaction, median (range) Have a job, N (%) Work for self, N (%) Volunteer work, N (%) Social Adjustment Scale score, mean (SD) Social Adjustment Scale T-score, mean (SD) Score 20 (62.50) 12 (37.50) 25 (78.12) 7 (21.88) 41.1 (13.3) 25 (78.13) 1 (3.13) 1 (3.13) 3 (9.38) 1 (3.13) 1 (3.13) 14.79 (15.94) 8.3 (18.40) 3 (4.64) 8.03 (9.20) 2.45 (3.00) 68.69 (19.88) 70.96 (15.43) 82.73 (13.76) 72.00 (23.04) 74.44 (25.18) 77.77 (16.46) 78.96 (16.44) 73.54 (20.20) 3 (3) 4 (4) 16 (51.6) 14 (45.2) 13 (41.9) 1.76 (0.44) 55.31 (13.46)

213

some participants would be more comfortable in one type of interview setting over another. Both the focus groups and individual interviews used the same set of core questions as our aim was to explore the topic in depth and encourage discussion of unique experiences. This contrasts with the aims of some focus group research where the intent is to reach consensus, to identify points of disagreement and to analyse the eects of

group dynamics.49 In this study, the data from each type of interview were analysed according to the individuals perspectives; the fact that we had a small number of members in each focus group (2, 3, and 4 participants) enabled us to identify individual perspective and comments with relative ease. Individual interviews were conducted by one of the research team members (EM, psychologist and researcher in

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214 psychiatry; MS, qualitative researcher in occupational science; SH, clinician and occupational therapist) and lasted between 60 and 90 min. The interviews took place in the participants homes, at the university, and/or over the telephone (rural or remote participants). Three focus groups of a similar duration were held at the university and facilitated by the above team members. The research team developed a standardized semi-structured interview guide; all participants were asked the same core set of questions, but interviewers maintained the latitude to ask additional questions where appropriate or required for clarication. Questions pertaining to stigma included: Have you experienced stigma as a result of having BD?; Does your diagnosis of BD have an impact on how you think about yourself?; and Do you think there are barriers in the healthcare system that aect your ability to stay well? These questions encouraged individuals to tell their own story, thereby contributing insights and experiences that broadened our understanding of managing well with BD and illuminating stigma. All interviews were audio recorded and transcribed verbatim. As is common in qualitative traditions, data collection and data analysis occurred concurrently,50,51 and thematic analysis34 was used to compare, contrast, and categorize the data into themes (both within and across transcripts). The data were coded, organized, and re-organized several times as categories were developed without reference to any conceptual frameworks, and an exploration of the relationships between and within sub-categories led to the development of an initial coding framework and preliminary themes. The research team met to evaluate the initial coding framework and to synthesize the categories and concepts into themes. Data were then re-coded according to these themes, whereupon coded data segments were again reviewed

Chronic Illness 7(3) to determine their t with each theme. NVivoQSR,52 a qualitative software program, was used to manage the data and facilitate data analysis. The team held analytic meetings to discuss and monitor coding consistency, and thus address the analytic validity of identied themes.53 In addition, the team met to ensure that the ndings were internally consistent and supported by the data from the participants interviews.54

Results
Demographic and clinical characteristics for the sample (N 32) are provided in Table 1. In terms of demographics, approximately two-thirds of the sample were women and most described themselves as Caucasian. In terms of clinical characteristics, three quarters of the sample were diagnosed with BD type I and mean scores on symptom measures indicated sub-threshold levels of manic symptoms and mild to moderate depressive symptoms, although QoL scores were in the normal (i.e., general population) range. It is worthwhile to note that the average participant had a signicant clinical history of BD, in terms of episodes and hospital admissions, indicating that, although this sample was currently functioning well, this was not simply a sample of individuals who had experienced a mild course of the disorder. Stigma arose as one theme from the qualitative data analysis of the larger wellness study. In this article, we focus upon ndings specic to participants experiences and understandings of stigma. As participants stories were analysed, the following four themes relevant to internalized stigma were identied: (1) expectations and experiences; (2) sense of self/identity; (3) judicious disclosure; and (4) moving beyond internalized stigma. Narrative excerpts are provided below to illustrate the four themes from the participants perspectives (Table 2).

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Michalak et al.
Table 2. Gender, age and diagnosis identifiers Pseudonym 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Anne Sarah Kate Jeannie Mary Hannah Lydia Olivia Charlotte Max Molly Jane Daria Pamela Bess Gendera 1 1 1 1 1 1 1 1 1 2 1 1 1 1 1 Age 41 42 47 25 68 35 38 62 23 25 34 45 55 51 45 Diagnosisb 2 1 1 1 1 2 1 2 1 1 1 2 1 2 1

215

Notes: aFemale 1; male 2. b BD I 1; BD II 2.

Expectations and experiences

The rst theme, expectations and experiences, describes the negative social responses that participants either anticipate or encounter as a result of having BD. All participants in the sample mentioned that, at some point during the course of their illness, they had expectations of, or actual experiences with, stigma. Here, expectation implies an assumed response of others to BD, as was implied by Anne: nobody looks twice at you if you have diabetes, but if you have a mental disorder, then youre crazy. Experiences, on the other hand, refer to actual exchanges that participants have had that were considered stigmatizing. To reect the interwoven manner in which participants discussed stigma expectations and experiences, these two concepts are combined into one theme for the purposes of this article. In relation to stigma experiences, several participants identied the sensationalistic

and inaccurate portrayal of BD by popular media. Sarah explained:

I think theres sort of cultural or media images of bipolar which totally dont relate to my reality. Frequently Ill be watching a TV show and usually its about some psychopathic murderer and they are dening him as bipolar . . .

Sarah also expressed concern with the media having latched onto BD as the tag of the day. Media images of BD impact the way society views and understands individuals living with the illnessa frustration that Kate expressed, They [the public] think youre homeless, picking pop cans, in and out of Riverview [a psychiatric hospital] you know, dangerous, violent, running around deranged. Participants frequently identied how culture, including ethnic background and familial culture, contributed to their experience of stigma. In particular, participants who identied as British, Asian or Indo-Canadian

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216 recognized an increased stigma due to their particular ethnic background. For example, a woman of Chinese descent, Jeannie, who was recently diagnosed with BD spoke about the high level of stigma within her own ethnic group: In the Chinese community I would say these mood disorders arent really recognised. Its either youre crazy or youre not. Two participants referred to an increased sense of shame associated with having a mental illness in the context of their British heritage. For instance, Mary referred to her BD as a closed issue and a closeted thing in our family. Other participants who did not identify with a particular ethnic group mentioned feelings of stigma within a smaller cultural unitthe family. They spoke about how mental illness was met with silence by people from their parents and grandparents generations. Indeed, the topic of intergenerational silence regarding family members living with mental illness was mentioned by many participants. For example, Mary said:
When I came out of from the hospital, I stopped by my grandmothers place and I was just told that my grandmother had the same problem, she will understand. But . . . then, it was understood that I would never ever mention that issue again.

Chronic Illness 7(3) or denitions of themselves. Although many of the participants acknowledged that their sense of self/identity has been aected by their BD diagnosis, not all of these eects were negative. More than one quarter of the sample felt that BD has had a negative eect on their self-image, while fewer respondents were either neutral or noted a positive impact of BD on their sense of self/identity. Although the relationship between BD and participants sense of self/identity was not always described in great detail, in certain cases, statements about this relationship were striking in terms of the potential magnitude of impact the diagnosis of BD carried. Lydia stated:
I had a huge amount of internal stigma, and walked around like Oh god, everybody knows, you know, and felt like a loser. I went into a huge depression around it, felt like I was inadequate.

Similarly, Olivia described the eect of the diagnosis:

Oh, I have a mental illness! Theres something wrong with me. Now no one will ever want me . . . feeling very awed . . . I dont want to be categorised .. . . I myself had an idea of what a bipolar person was like. . . and Im not like that.

Other experiences arose from an individuals current family circumstances. Hannah, who along with her young children, lived with her parents and described the familys response to her BD diagnosis:
But my family will continue for the rest of their lives to judge me for it [the BD diagnosis] . . . Once youve been diagnosed with an illness people will use that against you for the rest of your life.

Upon being asked whether or not BD has dened her, Lydia reected on how she would be perceived by others:
Oh, [it] dened me, yeah. So, I walked around thinking everybody could see, like oh, I have mental illness . . . I think I already had that kind of an internalized stigma or an internalized shame. And so it was just something that escalated it to a big huge like, walking blemish, you know . . .

Sense of self/identity
The sense of self/identity theme refers to the eect that BD has on participants views

Participants also spoke about how their identity was enveloped by BD, with their actions and behaviours being perceived by others as resulting from

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Michalak et al. their illness. Anne said:

People look down their nose at me. Attributing any time that Im happy or any time that Im sad to being bipolar. And its not me . . . being dened as bipolar, instead of me being dened as having bipolar.

217 functioning individuals with BD have learned to cope with and manage internalized stigma through judicious disclosure. Rather than simply hiding or coming out, the participants describe using an informal process to evaluate the extent to which they should reveal information about their BD. Jeannie dierentiated judicious disclosure from coming out by saying, I dont really disclose it to everyone. I dont advertise that Im bipolar. Similarly, Max recounted his fathers suggestion to, deal with it, acknowledge it, but it doesnt have to be on your business card. Through trial and error, many participants have adopted strategies to assess whether disclosing information about their BD will lead to positive or negative outcomes. For some participants, the nature of the setting is a consideration for whether to reveal information about their illness. They describe dierentiating between casual and formal situations when choosing to disclose their illness. Molly explained:
I dont have many close friends but Ive got lots of acquaintances, and Im very open about my episode and talking of bipolar. But in any kind of school or professional setting Id be pretty loath to talk about it.

Not all participants expressed a negative experience of their identity being subsumed or tainted by their BD diagnosis. For example, Sarah stated:
What Im nding is just managing life in general, just being a mom and a teacher and a wife and a homemaker and all that stu is enough to deal with. So that I dont think of it in terms of, am I managing this as a bipolar person? I just think, am I managing this as a person?

The people-rst discourse was also apparent in the following comment made by Charlotte: Getting a label doesnt mean it denes you, its like I am not bipolar. I have bipolar disorder, its something that I manage but it is not who I am. Some participants interpreted their association with BD as being positive for their identity. For example, a teacher, Sarah, described going through the process of being hospitalized due to BD and then regaining her functioning, reecting on it in a positive light:
[Y]ou dont want to admit stu like [depression] if youre a teacher because you think you have to be this perfect role model, but its not actually a aw. I think its actually a strength if you can go through something like that and come out on the other side . . . Cause theres a lot of kids who go through it too, and they need to know that theyre not alone.

Judicious disclosure
The third theme emerging from participants narratives refers to the ways in which high

In addition to varying disclosure strategies according to setting, participants also spoke about disclosing their BD only in situations where it was necessary or advantageous. For example, Jane felt that her illness was not publicly identiable and explained her reason for not disclosing her BD in the workplace: People in my work life dont know my diagnosis . . . because it doesnt interfere with my work at this time, so its not something I feel like I need to talk about. Jane elaborated on the value of having the right skills to identify situations where it may be benecial to disclose:
I denitely get better services by disclosing it. Like, for example, when I rst left my

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218
job in the middle of hypomanic episode and . . . when I talked to the woman at the EI [employment insurance oce] . . . I said, You know its, actually to be honest, Ive just been recently diagnosed with bipolar disorder . . . then she could understand my situation with compassion and that helped me get better services . . . I use it to my advantage.

Chronic Illness 7(3) injudicious disclosure:

My rst coming out of the closet happened rather dramatically with my having a nervous breakdown in school when I was a teacher . . . It was the best thing that ever happened to me . . . because now I could be sick in public and not worry about it.

Another consideration for judicious disclosure that several participants mentioned is whether the person to whom they are considering revealing information is perceived as knowledgeable and understanding. Daria oered a number of insights that contribute to an understanding of judicious and injudicious disclosure. Daria chose to disclose her BD only to people who she knew would receive the information well, such as a close circle of friends or colleagues: You see once people know you and love you and they nd that you have it, theyre not going to change their opinion. Failure to employ judicious disclosure strategies can lead to angst and worry amongst individuals with BD. Daria explained:
In retrospect I wish I had not told a few people whom I have told. Not being very judicious about who you tell denitely has its pitfalls.

Sarah reected on positive feelings that were associated with disclosing her BD: Its been a source of support if they know [about BD] and theyve just been treating me the same. Another participant, Pamela, described disclosure as the gateway to her continued wellness:
I said, Okay, I got bipolar illness. And I told people. It has always been a deep dark secret and it was that coming out and telling people where . . . I allowed myself to realise that I am bipolar.

Similarly, the process of disclosure is perceived by some as being empowering, as Charlotte shared:
I used to worry about stigma coming up and, honestly, whenever Ive disclosed . . . its been more of an empowering thing because its something youve come through and become stronger by.

However, some participants explained that disclosure of BD is not always a choice, as symptoms may unavoidably create situations of disclosure. These situations of injudicious or forced disclosure can be experienced as quite negative, as Daria described:
When Im sick I take pleasure in telling people Im bipolar .. . . since Ive been more stable, Ive not done it as often and I think thats a good plan because Im told that thats not necessarily who I am.

Moving beyond internalized stigma

The fourth theme, moving beyond internalized stigma, describes participants reections on no longer internalizing stigma towards their own mental illness. Several participants made specic reference to having moved beyond internalized stigma. This sentiment was articulated by Olivia who initially felt awed, but then I relaxed about it . . . and now it doesnt bother me. Anne acknowledged that, although she no longer allows her BD diagnosis to tarnish her self-image, stigma still exists

In contrast, Daria identied that positive experiences may also result from this type of

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Michalak et al. in society:

When I rst got my diagnosis, I felt like I was defective, but it doesnt really dene me anymore. I dont let it. But as far as society, very few people know [about her diagnosis] because of the stigma attached.

219 Participants face a constant negotiation between the stereotype-laden social-identity and the self-identity that they choose to adopt. Some qualitative research paints an essentializing and rather bleak picture as to how individuals with BD perceive themselves, for example, bipolar patients view themselves as unstable, defective, and helpless, their lives as disordered, their community as rejecting them, and their future as uncertain and hopeless.23 In contrast, our study suggests that people with BD are not always passive and inevitable receptacles of stigmarather, they describe a range of subjective experiences as they actively manage their illness and mitigate internalized stigma. Our analysis has uncovered that the subjective experience of stigma has consequences with respect to how individuals understand their sense of self or identity.* Drawing on a symbolic interactionist perspective (e.g.,5557) identity can be conceptualized as a complex social construction evolving out of various interactions with others in multiple social contexts.58 People develop their identities within a system of social interactions and negotiations, where meanings about the self are developed and transmitted.59 Thus, identities are strategic constructions created through interaction, with social and material consequences.57 Stigma is one such possible corollary. Study participants discussed the impact of BD upon their identity, with both positive and negative accounts emerging. An individuals identity is both personal and social57 and considered to be an outcome of social symbolic interaction.60 Ones personal identity refers to the idiosyncratic and unique attributes that distinguish the person from others;56 whereas ones social identity refers to how people see and
*Here, we use interchangeably. the terms self and identity

Sarah talked about her progression from diagnosis to her current state:
So, I dont think of myself as [a] bipolar person anymore. I just think of myself [as someone] who went through something. That was the handy label that they put on it because thats how [it] helped the professional to treat me and the treatment certainly helped.

Lydia commented that after initial feelings of internal stigma she was able to move beyond the labels she had allowed to shape her sense of self:
[I] came to another place. I guess I didnt really do a ip-side of it, but I have come slowly to an awareness that, you know what? Im not a freak and Im not so dierent from any other people.

On a similar note, Bess discussed her evolution from internalized stigma towards a more positive view of self where she was not ashamed about it . . . not anymore.

Discussion
In this article, we describe the qualitative ndings of a study regarding the selfmanagement strategies used by a sample of high functioning individuals with a chronic form of mental illness. Our analysis reveals that participants consider internalized stigma to be a factor that signicantly aects their ability to self-manage BD. Indeed, internalized stigma appears to add a layer of complexity for individuals with BD who are seeking to both reclaim their identity and recover their roles in society.

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220 dene themselves in relation to their membership in a social group or category.57 Traditionally, researchers59,6163 interested in the intersection between acquired illness and identity have theorized the experiences of illness as an unsettling and disturbing disruption. For some participants, the onset of BD marked a biographical disruption64 meaning that the onset of the illness signied a disruption in a persons life that was identityaltering requiring a re-negotiation of identity and resulting in internalized stigma.61,62,64,65 Some participants described having an illness identity imposed on themwhereby they were reduced to the symptoms and the undesirable characteristics of their illnessdespite currently managing well with their BD. Participants experiences with the enduring eects of an extrinsically imposed illness identity are consistent with Gomans56 theorizing, and consistent with qualitative research in relation to subjective experiences with schizophrenia.66 Participants in our study referenced several potential sources that perpetuate stigma experiences and illness identity, including the stereotypical media images of BD, and the shame and embarrassment that are embedded within families and ethnic cultural groups. For individuals who are managing well with their illness, BD is often a hidden condition, a concealable stigma. Individuals with a concealable stigma often have a choice of whether or not to disclose their illness to others. Consequently, managing the information that they share about their condition, also known as judicious disclosure, becomes a vital strategy to protect against negative reactions of others. As with the participants in other research,23 our sample provided detailed narratives about the disclosure decision-making process. Participants reported a range of positive (e.g., empowering) and negative (e.g., anxiety-provoking) experiences with the

Chronic Illness 7(3) disclosure process. As with the participants in the Schutze66 study, our participants suggest that the desire to maintain a normal life is a partial motive for using judicious disclosure strategies. Having to face disclosure decisions on a regular basis may create additional stressors and challenges for individuals who have concealable stigmatized conditions. Pachankis67 proposes that managing the threat of potential discovery of a concealable stigma may result in cognitive (e.g., suspiciousness, preoccupation), aective (e.g., anxiety, demoralization), behavioural (e.g., social avoidance, impaired relationships) and self-evaluative (e.g., diminished self-ecacy, identity ambivalence) consequences. While this model focuses on the negative consequences of concealing a stigma, our participants highlight potential positive features of judicious disclosure. Likewise, Corrigan and Lundin68 oer a more balanced view of the costs and benets for individuals who disclose their mental illness. They suggest that the potential benets of disclosure may include: not having to be concerned about hiding experiences, the ability to be more open, encouraging engagement with people who are supportive or who share similar experiences, and playing a role in combating public stigma. Potential costs of disclosure may include: encountering negative reactions, risks of ostracism, discrimination experiences, and increased anxiety associated with concern of how one is perceived by others. Increasingly, researchers question the original assumption that chronic illnesses necessarily result in a damaging biographical disruption.62,65,69 The results of this study support the literature that speaks to the risks associated with universalizing experiences of living with a chronic mental illness. Numerous study participants expressed positive accounts of living with BD, thus pointing to possible

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Michalak et al. transformative processes69 and highlighting diversity as opposed to homogeneity of experiences. Such ndings do not point to either a positive or negative single identity journey.62 Instead, they point to contextually sensitive, multiple possible iterations of identity struggles and re-negotiations resulting from experiences of living with chronic illness. Several participants described how, upon being diagnosed with BD, they initially incorporated societys negative attitudes towards mental illness internally, viewing themselves as damaged or awed. However, a proportion of the sample described a progression from a state of stigma to one in which they no longer endorse and internalize stigma. These participants describe a gradual process of coming to terms with the diagnosis of mental illness, navigating the pitfalls of public stigma, negotiating BD into a holistic sense of self, and integrating the illness experience into a positive social identitya process that is also reected in the ndings of other qualitative research.28,70 In their thorough review, Crocker and Major71 add insight into the phenomenon of individuals who successfully defend against the negative eects of internalized stigma. They proposed a number of mechanisms by which individuals seek protection from stigma through their stigmatized group membership, such as attributing negative feedback to ones group membership, comparing themselves to others in similar situations (i.e., in-group comparisons), and selectively devaluing dimensions or attributes to which they or their group fare poorly. Many of these self-protective mechanisms resonate with the experiences of participants of this study, who actively manage their illness as well as the potential damage of internalized stigma. From a clinical perspective, our ndings point to the potential importance of exploring understandings of stigma within the context of psychosocial interventions (e.g., psycho education or cognitive behaviour therapy)

221 for chronic mental health conditions such as BD.

Limitations
The limitations of this study involve two related elements of the research design. Stigma is a theme that arose from a larger study that centred on self-management strategies that high functioning people with BD use to maintain or regain wellness. Thus, the interview questions posed to elicit stigma experiences and opinions were embedded in this larger study but did not constitute the primary research focus. A greater depth and breadth of perspectives about stigma may have been revealed by participants if it was the main purpose of the study. Related to this design feature is the recruitment process and subsequent sample that was created. The purposeful sampling that occurred through recruiting participants who were interested in, and capable of, describing their wellness strategies is likely to have missed many individuals who were primarily interested in sharing their views and lived experiences of stigma. Finally, the stigma ndings do not reect the perspectives of individuals with BD who are, by self-denition and quantitative measures, not managing as well with their condition. These insights may be forthcoming when the second phase of the study (in which we are interviewing people who are struggling to manage their BD) is complete. We have also undertaken further qualitative research into understandings of stigma using community-based research methods (see www.crestbd.ca for further details). Despite these limitations, the ndings contribute to a growing body of literature that seeks to understand stigma through the lenses of those who experience it.

Conclusions
Consistent with other qualitative studies,70,72 our ndings reveal that individuals

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222 who are assigned to a stigmatized group do not necessarily, nor passively, accept the negative consequences of this group membership. Few published studies describe how individuals with BD subjectively experience stigma. Moreover, no studies to date have focused specically on how individuals who are functioning well with chronic mental illness understand and experience internalized stigma. By exploring stigma in a group of individuals who are well, this study adds new insight into the subjective experience of stigma and extends the qualitative research in this area.

Chronic Illness 7(3)

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Acknowledgements
We are indebted to the individuals who gave their time to participate in this study. E. Michalak is supported by a Scholar Award from the Michael Smith Foundation for Health Research and a New Investigator award from the Canadian Institutes for Health Research. The study was funded by the BC Medical Services Foundation.

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