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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

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Article
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‘It’s something that I manage ! The Author(s) 2011
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DOI: 10.1177/1742395310395959
reflections on internalized chi.sagepub.com

stigma in individuals with

bipolar 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 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 ¼ 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.

5
1
Department of Psychiatry, University of British Columbia, Rehabilitation Sciences, Faculty of Medicine, University of
2255 Wesbrook Mall, Vancouver, BC, Canada V6T 2A1 British Columbia, Vancouver, BC, Canada
6
2
BC Mental Health and Addiction Services, 70 Colony Faculty of Medicine, University of British Columbia,
Farm Road, Port Coquitlam, BC, Canada V3C 5X9 Vancouver, BC, Canada
3
Faculty of Health and Social Development, University of Corresponding author:
British Columbia, Kelowna, BC, Canada Erin Michalak, Department of Psychiatry, University of
4
Department of Occupational Science and Occupational British Columbia, 2255 Wesbrook Mall, Vancouver, BC,
Therapy, University of British Columbia, Vancouver, BC, Canada V6T 2A1
Canada Email: erin.michalak@ubc.ca
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Keywords
bipolar disorder, stigma, qualitative methods, functioning, self-management
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 practices—the structures that sur-
round a person—that 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 individual’s experiences, percep-
tions, or anticipation of negative social reac-
tions on the basis of their mental illness.1,5–7
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
[1–16]
hypomania (the subsyndromal counterpart
to mania). Research into BD has historically
focused upon the biological and genetic
causes of the condition, and pharmacolog-
ical 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 recog-
nized that psychosocial factors have a sig-
nificant 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 exam-
ple).11–14 Further, there is growing evidence
that psychosocial interventions improve
outcomes in BD.15
Research into the role of one psychoso-
cial factor in particular—stigma—has also
been slow on the uptake in relation to mood
disorders,16–18 but existing studies have
revealed that, like other psychiatric illnesses,
BD is a profoundly stigmatizing condi-
tion19–23 and that stigma is a common
experience in both people with BD and
their caregivers.19,24–26 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 (N ¼ 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
adaptation, and sociodemographic charac-
teristics were controlled for.27
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Michalak et al.
In addition to these quantitative investi-
gations, 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
(N ¼ 19).21 Participants described employ-
ing 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 ¼ 26) 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 occupying different roles in rela-
tion to BD (those who experience BD, care
for persons with BD, or are experts in
treating BD) all identified stigma and dis-
crimination 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 dysfunction—by 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
[1–16]
3
experience 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
group holds the potential to provide
insights into experiences at a different
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 situ-
ated 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 objective of
this article is to focus in depth upon the
last of these themes: experiences and under-
standings 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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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.
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.35–37 A
review of the research using descriptive
qualitative methods revealed frequent
sample sizes of between 10 and 20 partici-
pants (e.g.,38–44). 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
[1–16]
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
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Table 1. Demographic and clinical characteristics (N ¼ 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 (3.2)
First nations 1 (3.2)
Asian 3 (9.4)
Not applicable 1 (3.2)
Other 1 (3.2)
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)
Overall—General 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)

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 individual’s 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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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
[1–16]
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 (N ¼ 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 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).
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Table 2. Gender, age and diagnosis identifiers

Pseudonym Gendera Age Diagnosisb

1 Anne 1 41 2
2 Sarah 1 42 1
3 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 1
14 Pamela 1 51 2
15 Bess 1 45 1

Notes: aFemale ¼ 1; male ¼ 2.

b
BD I ¼ 1; BD II ¼ 2.

and inaccurate portrayal of BD by popular

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 you’re 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
media. Sarah explained:
I think there’s sort of cultural or media
images of bipolar which totally don’t relate
to my reality. Frequently I’ll be watching a
TV show and usually it’s 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 illness—a frustration
that Kate expressed, ‘They [the public] think
you’re 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
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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 aren’t really recog-
nised. It’s either you’re crazy or you’re 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
unit—the 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, I
stopped by my grandmother’s 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-
ual’s current family circumstances. Hannah,
who along with her young children, lived
with her parents and described the family’s
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 you’ve 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
[1–16]
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 quarter
of 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! There’s some-
thing wrong with me. Now no one will ever
want me . . . feeling very flawed . . . I don’t
want to be categorised .. . . I myself had an
idea of what a bipolar person was like-
. . . and I’m 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
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their illness. Anne said:
People look down their nose at me.
Attributing any time that I’m happy or
any time that I’m sad to being bipolar. And
it’s 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 I’m finding is just managing life in
general, just being a mom and a teacher
and a wife and a homemaker and all that
stuff is enough to deal with. So that I don’t
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 doesn’t mean
it defines you, it’s like I am not bipolar. I
have bipolar disorder, it’s 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 don’t want to admit stuff like
[depression] if you’re a teacher because
you think you have to be this perfect role
model, but it’s not actually a flaw. I think
it’s actually a strength if you can go
through something like that and come
out on the other side . . . Cause there’s a
lot of kids who go through it too, and they
need to know that they’re not alone.
Judicious disclosure
The third theme emerging from participants’
narratives refers to the ways in which high
[1–16]
9
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 informal
process to evaluate the extent to which they
should reveal information about their BD.
Jeannie differentiated judicious disclosure
from ‘coming out’ by saying, ‘I don’t really
disclose it to everyone. I don’t advertise that
I’m bipolar.’ Similarly, Max recounted his
father’s suggestion to, ‘deal with it, acknowl-
edge it, but it doesn’t 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 don’t have many close friends but I’ve got
lots of acquaintances, and I’m very open
about my episode and talking of bipolar.
But in any kind of school or professional
setting I’d 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
don’t know my diagnosis . . . because it
doesn’t interfere with my work at this time,
so it’s 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
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job in the middle of hypomanic episode
and . . . when I talked to the woman at the
EI [employment insurance office] . . . I said,
‘You know it’s, actually to be honest, I’ve
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.
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, they’re
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 I’m sick I take pleasure in telling
people I’m bipolar .. . . since I’ve been more
stable, I’ve not done it as often and I think
that’s a good plan because I’m told that
that’s not necessarily who I am.
In contrast, Daria identified that positive
experiences may also result from this type of
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Chronic Illness 0(0)
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 that
ever 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:
‘It’s been a source of support if they
know [about BD] and they’ve 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 I’ve disclo-
sed . . . it’s been more of an empowering
thing because it’s something you’ve 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
doesn’t bother me.’
Anne acknowledged that, although
she no longer allows her BD diagnosis to
tarnish her self-image, stigma still exists
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in society:
When I first got my diagnosis, I felt like I
was defective, but it doesn’t really define
me anymore. I don’t let it. But as far as
society, very few people know [about her
diagnosis] because of the stigma attached.
Sarah talked about her progression from
diagnosis to her current state:
So, I don’t 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 that’s how [it] helped the pro-
fessional to treat me and the treatment
certainly 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 didn’t
really do a flip-side of it, but I have come
slowly to an awareness that, you know
what? I’m not a freak and I’m not so
different 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.
[1–16]
11
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 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
stigma—rather, 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.,55–57) 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-
vidual’s identity is both personal and
social57 and considered to be ‘an outcome
of social symbolic interaction’.60 One’s per-
sonal identity refers to the idiosyncratic
and unique attributes that distinguish the
person from others;56 whereas one’s
social identity refers to how people see and
*Here, we use the terms ‘self’ and ‘identity’
interchangeably.
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define themselves in relation to their mem-
bership in a social group or category.57
Traditionally, researchers59,61–63 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 disruption’64 mean-
ing that the onset of the illness signified a
disruption in a person’s 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 them—whereby
they were reduced to the symptoms and the
undesirable characteristics of their ill-
ness—despite currently managing well with
their BD. Participants’ experiences with the
enduring effects of an extrinsically imposed
illness identity are consistent with
Goffman’s56 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
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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
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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 society’s 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-
tity—a 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 one’s 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)
[1–16]
13
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
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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 experience
stigma. 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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