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2011 7: 209 originally published online 28 February 2011Chronic IllnessHaddock

Erin Michalak, James D Livingston, Rachelle Hole, Melinda Suto, Sandra Hale and Candacestigma in individuals with bipolar disorder

'It's something that I manage but it is not who I am': reflections on internalized

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Article

Its something that I managebut it is not who I am:reflections on internalizedstigma in individuals withbipolar disorder

Erin Michalak1, James D Livingston2,

Rachelle Hole3

, Melinda Suto4

, Sandra Hale5

and Candace Haddock6

Abstract

Bipolar disorder (BD) is a complex chronic condition associated with substantial costs, both at apersonal and societal level. Growing research indicates that experiences with stigma may play asignificant role in contributing to the distress, disability, and poor quality of life (QoL) oftenexperienced in people with BD. Here, we present a sub-set of findings from a qualitative study ofself-management strategies utilized by high functioning Canadian individuals with BD. Specifically,we describe a theme relating to participants experiences and understandings of internalizedstigma. Descriptive qualitative methods were used including purposeful sampling and thematicanalysis. High functioning individuals with BD type I or II (N32) completed quantitative scales toassess symptoms, functioning and QoL, and participated in an individual interview or focus groupto discuss the self-management strategies that they use to maintain or regain wellness. Thematicanalysis identified several themes, including one relating to internalized stigma. Within this, fouradditional 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 thestudy is that it involves a participant sample that is managing well with their illness, which differsfrom the norm in biomedical research that typically focuses on pathology, problems anddysfunction.

Chronic Illness

7(3) 209224

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1Department of Psychiatry, University of British Columbia,

Vancouver, BC, Canada2BC Mental Health and Addiction Services, Port

Coquitlam, BC, Canada3Faculty of Health and Social Development, University of

British Columbia, Kelowna, BC, Canada4

Department of Occupational Science and OccupationalTherapy, University of British Columbia, Vancouver, BC,

Canada

5Rehabilitation Sciences, Faculty of Medicine, University of

British Columbia, Vancouver, BC, Canada6Faculty 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: [email protected]

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Keywords

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

Received 3 December 2010; accepted 4 December 2010

Introduction

People with mental illness often have to

endure negative life experiences due to the

symptoms of their condition and face deficits

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 differential.1 Three levels of stigma

identified within the research literature con-

sist of public, structural and internalized

stigma. Public stigma refers to the phenom-

enon of large social groups endorsing stereo-

types about mental illness and acting against

individuals who are labelled mentally ill.2

Structural stigma refers to institutional pol-

icies and practicesthe structures that sur-

round 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 char-

acterized by negative feelings (about self),

maladaptive behaviour, identity transforma-

tion, or stereotype endorsement resulting

from an individuals experiences, percep-

tions, or anticipation of negative social reac-

tions 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 hypo-

mania (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 correspond-

ing research into other forms of mental

illness, such as unipolar depression or schizo-

phrenia. However, it is now recognized that

psychosocial factors have a significant 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 psychoso-

cial 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 condi-

tion1923 and that stigma is a common

experience in both people with BD and

their caregivers.19,2426 Research also indi-

cates that internalized stigma can have pro-

found implications for behaviours and

outcomes in affected individuals. For exam-

ple, a study of 200 individuals with either a

diagnosis or significant family history of BD

found that those with heightened percep-

tions of stigma described themselves as

significantly less willing to have children.19

Another study of people with BD (N264)

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

210 Chronic Illness 7(3)



4/17

adaptation, and sociodemographic charac-

teristics were controlled for.27

In addition to these quantitative investiga-

tions, a small number of qualitative

studies have highlighted the potential influ-ence of internalized stigma on subjective

experiences. Stigma experiences were

described by all participants in a study of

depressed individuals with rapid-cycling BD

(N19).21 Participants described employing

strategies for selectively disclosing their diag-

nosis, 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

(N26) participating in an Internet-based

study described their loss of a sense of self,

uncertainty about the future, and stigma as

major difficulties that they faced following

their diagnosis.28 Our own qualitative

research has revealed that individuals occu-

pying different roles in relation to BD (those

who experience BD, care for persons with BD,

or are experts in treating BD) all identified

stigma and discrimination as factors that can

profoundly impact QoL20 and workplace

functioning for people in this population.22

In summary, there are preliminary quan-

titative and qualitative findings 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 findings from a

study examining the self-management strat-

egies 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 research-

which historically has focused on pathology

and dysfunctionby adopting a strengths-

based approach. Second, we were cognisant

from our QoL research20 in this area that

some people with BD do learn to live well

with this chronic health condition and expe-

rience good QoL; we believed that it was

important to give voice to the positive well-

being strategies found effective by these

individuals. Third, focusing on this groupholds the potential to provide insights into

experiences at a different point in the

recovery timeline; people who are function-

ing 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-effects,

and whose lives are immersed within the

medical system. Data from the participant

sample were analysed to identify five themes

regarding wellness in BD: (1) taking care of

myself: self-management strategies for

BD;29,30 (2) accepting BD, not being defined

by it; (3) social support; (4) focus on

personal growth; and (5) stigma. The objec-

tive of this article is to focus in depth upon

the last of these themes: experiences and

understandings of stigma from the perspec-

tive 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

Michalak et al. 211



5/17

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 Boardcommittee.

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 partici-

pants (e.g.,3844). Although our initial

recruitment strategies yielded a sample size

commensurate with qualitative description,

it did not reflect the experiences of individ-

uals with BD type II. Purposeful sampling45

was therefore subsequently used to selec-

tively recruit for male participants and indi-

viduals with BD type II yielding a final

sample size of 32. Participants were

recruited by distributing advertisements

throughout British Columbia, Canada via

a range of methods, including newsletters of

local non-profit mental health organiza-

tions, newspapers, public lectures and edu-

cation 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.

Screening

Potential participants were screened by tele-

phone for inclusion with the MINI

International Neuropsychiatric Interview46

to confirm diagnosis of BD and with the

Multidimensional Scale of Independent

Functioning (MSIF)47 to assess functioning

across work, residential, and educational

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 fluent 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 partic-

ipation in a qualitative interview or focus

group difficult (e.g., severe depression or

florid mania). Individuals who were

experiencing a mood episode but were still

functioning well remained eligible for par-

ticipation, 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.

Quantitative methods

Upon consenting to participate in the

research, participants were asked to com-

plete several self-report and clinician-

administered 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 ascer-

tained until the analysis phase of the study;

consequently, quantitative scales of inter-

nalized 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 strat-

egies 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




6/17

some participants would be more comfort-

able in one type of interview setting over

another. Both the focus groups and individ-

ual 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 effects 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

Table 1. Demographic and clinical characteristics (N 32)

Variable Score

Sex

Females, N (%) 20 (62.50)Male,N (%) 12 (37.50)

Type

Bipolar I,N (%) 25 (78.12)

Bipolar II,N (%) 7 (21.88)

Age, mean years (SD) 41.1 (13.3)

Ethnicity

Caucasian 25 (78.13)

Indo-Canadian 1 (3.13)

First nations 1 (3.13)

Asian 3 (9.38)

Not applicable 1 (3.13)Other 1 (3.13)

Depressive episodes, mean # (SD) 14.79 (15.94)

Manic episodes, mean # (SD) 8.3 (18.40)

Hospitalisations, mean # (SD) 3 (4.64)

Hamilton Depression Rating Scale, mean score (SD) 8.03 (9.20)

Young Mania Rating Scale, mean score (SD) 2.45 (3.00)

Quality of Life Enjoyment and Satisfaction Scale

Physical Health domain, % max score (SD) 68.69 (19.88)

General Feeling domain, % max score (SD) 70.96 (15.43)

Work domain, % max score (SD) 82.73 (13.76)

Household Duties domain, % max score (SD) 72.00 (23.04)School/Coursework domain, % max score (SD) 74.44 (25.18)

Leisure Time Activities domain, % max score (SD) 77.77 (16.46)

Social domain, % max score (SD) 78.96 (16.44)

OverallGeneral domain, % max score (SD) 73.54 (20.20)

Satisfaction with medication, median (range) 3 (3)

Overall life satisfaction, median (range) 4 (4)

Have a job,N (%) 16 (51.6)

Work for self,N (%) 14 (45.2)

Volunteer work,N (%) 13 (41.9)

Social Adjustment Scale score, mean (SD) 1.76 (0.44)

Social Adjustment Scale T-score, mean (SD) 55.31 (13.46)

Michalak et al. 213



7/17

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 sim-

ilar duration were held at the university and

facilitated by the above team members. The

research team developed a standardized

semi-structured interview guide; all partici-

pants were asked the same core set of

questions, but interviewers maintained the

latitude to ask additional questions where

appropriate or required for clarification.

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 affect 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 inter-

views 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 catego-

rize 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 devel-

opment 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

to determine their fit with each theme.

NVivoQSR,52 a qualitative software pro-

gram, was used to manage the data and

facilitate data analysis. The team held ana-

lytic meetings to discuss and monitor cod-ing consistency, and thus address the

analytic validity of identified themes.53 In

addition, the team met to ensure that the

findings were internally consistent and sup-

ported by the data from the participants

interviews.54

Results

Demographic and clinical characteristics for

the sample (N32) 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 significant clinical

history of BD, in terms of episodes and

hospital admissions, indicating that,

although this sample was currently func-

tioning 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 well-

ness study. In this article, we focus upon

findings specific to participants experiences

and understandings of stigma. As partici-

pants stories were analysed, the following

four themes relevant to internalized

stigma were identified: (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).




8/17

Expectations and experiences

The first theme, expectations and experi-

ences, 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 experi-

ences 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 reflect

the interwoven manner in which partici-

pants discussed stigma expectations and

experiences, these two concepts are com-

bined into one theme for the purposes of this

article.

In relation to stigma experiences, several

participants identified 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 defin-

ing 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 individ-

uals 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 identified how cul-

ture, including ethnic background and famil-

ial culture, contributed to their experience of

stigma. In particular, participants who iden-

tified as British, Asian or Indo-Canadian

Table 2. Gender, age and diagnosis identifiers

Pseudonym Gendera Age Diagnosisb

1 Anne 1 41 2

2 Sarah 1 42 13 Kate 1 47 1

4 Jeannie 1 25 1

5 Mary 1 68 1

6 Hannah 1 35 2

7 Lydia 1 38 1

8 Olivia 1 62 2

9 Charlotte 1 23 1

10 Max 2 25 1

11 Molly 1 34 1

12 Jane 1 45 2

13 Daria 1 55 114 Pamela 1 51 2

15 Bess 1 45 1

Notes: aFemale1; male2.bBD I1; BD II2.

Michalak et al. 215



9/17

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 ethnicgroup: In the Chinese community I would

say these mood disorders arent really recog-

nised. 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 gen-

erations. Indeed, the topic of intergenera-

tional 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, Istopped 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.

Other experiences arose from an individ-

uals 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.

Sense of self/identity

The sense of self/identity theme refers to

the effect that BD has on participants views

or definitions of themselves. Although many

of the participants acknowledged that their

sense of self/identity has been affected

by their BD diagnosis, not all of these

effects were negative. More than one quarterof the sample felt that BD has had a negative

effect 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 relation-

ship 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, every-

body 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 effect of

the diagnosis:

Oh, I have a mental illness! Theres some-

thing wrong with me. Now no one will ever

want me . . . feeling very flawed . . . I dont

want to be categorised .. . . I myself had an

idea of what a bipolar person was like-

. . . and Im not like that.

Upon being asked whether or not BD has

defined her, Lydia reflected on how she

would be perceived by others:

Oh, [it] defined 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 . . .

Participants also spoke about how

their identity was enveloped by BD, with

their actions and behaviours being per-

ceived by others as resulting from




10/17

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 defined as bipolar,instead of me being defined as having

bipolar.

Not all participants expressed a negative

experience of their identity being subsumed

or tainted by their BD diagnosis. For exam-

ple, Sarah stated:

What Im finding is just managing life in

general, just being a mom and a teacher

and a wife and a homemaker and all thatstuff 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-first discourse was also

apparent in the following comment made

by Charlotte: Getting a label doesnt mean

it defines 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 asso-

ciation 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, reflecting on it

in a positive light:

[Y]ou dont want to admit stuff like

[depression] if youre a teacher becauseyou think you have to be this perfect role

model, but its not actually a flaw. 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

functioning individuals with BD have

learned to cope with and manage internal-

ized stigma through judicious disclosure.

Rather than simply hiding or coming out,

the participants describe using an informalprocess to evaluate the extent to which they

should reveal information about their BD.

Jeannie differentiated 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, acknowl-

edge it, but it doesnt have to be on your

business card.

Through trial and error, many partici-

pants have adopted strategies to assess

whether disclosing information about their

BD will lead to positive or negative out-

comes. For some participants, the nature of

the setting is a consideration for whether to

reveal information about their illness. They

describe differentiating between casual and

formal situations when choosing to disclose

their illness. Molly explained:

I dont have many close friends but Ive gotlots 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.

In addition to varying disclosure strate-

gies according to setting, participants also

spoke about disclosing their BD only in

situations where it was necessary or advan-

tageous. For example, Jane felt that her

illness was not publicly identifiable 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 beneficial to disclose:

I definitely get better services by disclosing

it. Like, for example, when I first left my

Michalak et al. 217



11/17

job in the middle of hypomanic episode

and . . . when I talked to the woman at the

EI [employment insurance office] . . . I said,

You know its, actually to be honest, Ive

just been recently diagnosed with bipolar

disorder. . .

then she could understand mysituation with compassion and that helped

me get better services . . . I use it to my

advantage.

Another consideration for judicious dis-

closure that several participants mentioned

is whether the person to whom they are

considering revealing information is per-

ceived as knowledgeable and understanding.

Daria offered 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 find 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 definitely has

its pitfalls.

However, some participants explained

that disclosure of BD is not always a

choice, as symptoms may unavoidably

create situations of disclosure. These situa-

tions 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.

In contrast, Daria identified that positive

experiences may also result from this type of

injudicious disclosure:

My first coming out of the closet hap-

pened rather dramatically with my hav-

ing a nervous breakdown in school when

I was a teacher. . .

It was the best thing thatever happened to me . . . because now

I could be sick in public and not worry

about it.

Sarah reflected 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 disclo-

sed . . . its been more of an empowering

thing because its something youve come

through and become stronger by.

Moving beyond internalized stigma

The fourth theme, moving beyond inter-

nalized stigma, describes participants

reflections on no longer internalizing

stigma towards their own mental illness.

Several participants made specific refer-

ence to having moved beyond internalized

stigma. This sentiment was articulated

by Olivia who initially felt flawed,

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




12/17

in society:

When I first got my diagnosis, I felt like I

was defective, but it doesnt really define

me anymore. I dont let it. But as far as

society, very few people know [about herdiagnosis] because of the stigma attached.

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 pro-

fessional to treat me and the treatmentcertainly helped.

Lydia commented that after initial feel-

ings 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 flip-side of it, but I have come

slowly to an awareness that, you know

what? Im not a freak and Im not sodifferent 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

findings of a study regarding the self-

management 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 significantly affects

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.

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 tohow individuals with BD perceive them-

selves, for example, bipolar patients view

themselves as unstable, defective, and help-

less, their lives as disordered, their commu-

nity 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 internal-

ized stigma.

Our analysis has uncovered that the

subjective experience of stigma has conse-

quences with respect to how individuals

understand their sense of self or identity.*

Drawing on a symbolic interactionist per-

spective (e.g.,5557) identity can be concep-

tualized 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 devel-

oped and transmitted.59 Thus, identities are

strategic constructions created through

interaction, with social and material conse-

quences.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 indi-

viduals identity is both personal and

social57 and considered to be an outcome

of social symbolic interaction.60 Ones per-

sonal 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 the terms self and identityinterchangeably.

Michalak et al. 219



13/17

define themselves in relation to their mem-

bership in a social group or category.57

Traditionally, researchers59,6163 interested

in the intersection between acquired illness

and identity have theorized the experiencesof illness as an unsettling and disturbing

disruption.

For some participants, the onset of BD

marked a biographical disruption64 mean-

ing that the onset of the illness signified a

disruption in a persons life that was identity-

altering requiring a re-negotiation of identity

and resulting in internalized stigma.61,62,64,65

Some participants described having an ill-

ness identity imposed on themwhereby

they were reduced to the symptoms and the

undesirable characteristics of their ill-

nessdespite currently managing well with

their BD. Participants experiences with the

enduring effects of an extrinsically imposed

illness identity are consistent with

Goffmans56 theorizing, and consistent with

qualitative research in relation to subjective

experiences with schizophrenia.66

Participants in our study referenced sev-

eral 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 disclo-

sure, 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., anxi-

ety-provoking) experiences with the

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 stres-

sors and challenges for individuals who

have concealable stigmatized conditions.

Pachankis67 proposes that managing the

threat of potential discovery of a conceal-

able stigma may result in cognitive (e.g., sus-

piciousness, preoccupation), affective (e.g.,

anxiety, demoralization), behavioural

(e.g., social avoidance, impaired relation-

ships) and self-evaluative (e.g., diminished

self-efficacy, identity ambivalence) conse-

quences. 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 offer a

more balanced view of the costs and benefits

for individuals who disclose their mental

illness. They suggest that the potential

benefits of disclosure may include: not

having to be concerned about hiding expe-

riences, the ability to be more open, encour-

aging engagement with people who

are supportive or who share similar experi-

ences, and playing a role in combating

public stigma. Potential costs of disclosure

may include: encountering negative reac-

tions, risks of ostracism, discrimination

experiences, and increased anxiety associ-

ated with concern of how one is perceived

by others.

Increasingly, researchers question the

original assumption that chronic illnesses

necessarily result in a damaging biographi-

cal 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 men-

tal illness. Numerous study participants

expressed positive accounts of living

with BD, thus pointing to possible




14/17

transformative processes69 and highlighting

diversity as opposed to homogeneity of

experiences. Such findings do not point to

either a positive or negative single identity

journey.

62

Instead, they point to contextu-ally sensitive, multiple possible iterations of

identity struggles and re-negotiations result-

ing 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 flawed. However,

a proportion of the sample described a

progression from a state of stigma to one

in which they no longer endorse and inter-

nalize 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 iden-

titya process that is also reflected in the

findings of other qualitative research.28,70 In

their thorough review, Crocker and Major71

add insight into the phenomenon of indi-

viduals who successfully defend against the

negative effects 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, com-

paring themselves to others in similar situ-

ations (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 clin-

ical perspective, our findings point to

the potential importance of exploring

understandings of stigma within the context

of psychosocial interventions (e.g., psycho

education or cognitive behaviour therapy)

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 strat-

egies 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 findings do not

reflect the perspectives of individuals with

BD who are, by self-definition and quanti-

tative measures, not managing as well with

their condition. These insights may be forth-

coming 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 findings 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 stud-

ies,70,72 our findings reveal that individuals

Michalak et al. 221



15/17

who are assigned to a stigmatized group do

not necessarily, nor passively, accept the

negative consequences of this group mem-

bership. Few published studies describe how

individuals with BD subjectively experiencestigma. Moreover, no studies to date have

focused specifically on how individuals who

are functioning well with chronic mental

illness understand and experience internal-

ized 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.

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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