‘It’s something that I manage but it is not who I am’: reflections on internalized stigma in individuals with bipolar disorder

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.

Psychosocial Functioning in Bipolar Disorder from a Social Justice Perspective

“…A more severe illness history -including a younger age at onset (Hays, Krishnan, George, & Blazer, 1998) and a greater number of mood episodes (MacQueen et al, 2000) and psychiatric hospitalizations (Altshuler et al, 2007) -yields reduced functioning even during euthymia (Martinez-Aran et al, 2004;Zubieta, Huguelet, O'Neil, & Giordani, 2001). In addition, common comorbidities of BD, such as anxiety (Boylan et al, 2004;Kauer-Sant Anna et al, 2007) and substance use disorders (SUD; Jaworski et al, 2011;Lagerberg et al, 2010), disrupt identity development (Michalak et al, 2011), increase symptoms and social avoidance (Jaworski et al, 2011;Otto et al, 2006), interfere with interpersonal engagement (Elgie & Morselli, 2007), exacerbate cognitive impairment (Latvala et al, 2009;Levy & Weiss, 2009;Silva & Leite, 2000), and generally reduce functioning (Goldstein & Levitt, 2008;Sanchez-Moreno et al, 2009 In euthymic BD, two of the strongest predictors of social and occupational functioning are subsyndromal depressive symptoms and cognitive impairment (Bearden et al, 2011;Bonnin et al, 2010;Dickerson et al, 2010;Martínez-Arán et al, 2011;Martino et al, 2009;Tabares-Seisdedos et al, 2008). Even very mild subsyndromal depression leads to reduced functioning including poorer vocational performance (Bearden et al, 2011;Gitlin, Mintz, Sokolski, Hammen, & Altshuler, 2010).…”

“…Longitudinal, cross-sectional and qualitative studies, now summarized in multiple reviews, have documented substantial levels of social and occupational impairment in BD, even during euthymia Burdick, Goldberg, & Harrow, 2010;Coryell et al, 1993;Dickerson et al, 2010;Huxley & Baldessarini, 2007;Latalova, Prasko, Diveky, & Velartova, 2011;Martino et al, 2011;McMorris, Downs, Panish, & Dirani, 2010;Michalak, Yatham, Maxwell, Hale, & Lam, 2007;Michalak et al, 2011;Montoya et al, 2010;Pope, Dudley, & Scott, 2007;Rosa et al, 2010). Longitudinal studies show that between 90 to 98% of people receiving treatment for an acute episode of BD achieve syndromal recovery within six months to two years Dickerson et al, 2010;Huxley & Baldessarini, 2007;Tohen, Waternaux, & Tsuang, 1990;Tohen et al, 2000).…”

“…Even if all internal factors that predict lower functioning were identified and successfully treated, people with BD may still not achieve functional recovery due to environmental influences that include level of expressed emotion (i.e., criticism or stigmatization of person with BD) in families (Elgie & Morselli, 2007;McMurrich & Johnson, 2009), stigma (Michalak et al, 2011;Perlick et www.intechopen.com al., 2001;Vazquez et al, 2011), discrimination Elgie & Morselli, 2007;Michalak et al, 2007;Tse & Yeats, 2002), and lack of social support (Elgie & Morselli, 2007;Michalak, Yatham, Kolesar, & Lam, 2006;Michalak et al, 2011). This notion is consistent with qualitative studies showing people with BD describing stigma, discrimination, reduction in social (especially family) support, shame and identity loss as the greatest challenges they face in dealing with their illness and functional recovery (Elgie & Morselli, 2007;Michalak et al, 2006;Michalak et al, 2007;Michalak et al, 2011;Proudfoot et al, 2009). People with BD describe social validation and support as the most important components that determine their quality of life (QOL; Michalak et al, 2006;Michalak et al, 2007;Michalak et al, 2011). In fact, many people with BD consider social inclusion to be more important than symptom resolution or clinical remission (Michalak et al, 2006).…”

Implicações da relação entre estigma internalizado e suporte social para a saúde: uma revisão sistemática da literatura

“…Algumas condições de saúde estão associadas a valores culturais que resultam na construção de uma 'identidade deteriorada', e na consequente estigmatização na medida em que elas são socialmente signifi cativas (Fife & Wright, 2000;Link & Phelan, 2006). Com isso, além de precisarem enfrentar as experiências negativas decorrentes dos sintomas da própria condição de saúde, os indivíduos, muitas vezes precisam lidar com as atitudes e comportamentos negativos da sociedade, além de seus próprios (Michalak et al, 2011).…”

The Treatment of Bipolar Disorder

“…6 Patients also experience psychotic symptoms, impaired functioning, compromised quality of life, and stigma. 7,8 Treatment of bipolar disorder conventionally focuses on acute stabilisation, in which the goal is to bring a patient with mania or depression to a symptomatic recovery with euthymic (stable) mood; and on maintenance, in which the goals are relapse prevention, reduction of subthreshold symptoms, and enhanced social and occupational functioning. Treat ment of both phases of the illness can be complex, because the same treatments that alleviate depression can cause mania, hypomania, or rapid cycling (defined as four or more episodes in 12 months), and the treatments that reduce mania might cause rebound depressive episodes.…”