Double Stigma

Adam* received the first diagnosis—obsessive-compulsive disorder—when he was 17. Other diagnoses followed, including bipolar disorder. He later experienced depression, had failed relationships, and made a suicide attempt, all while wrestling with what he calls the “chameleon” nature of his gender identity. Adam, who identifies as transgender, was assigned male at birth, but sometimes presents as female. He typically uses masculine pronouns.

Research has found that those in the LGBT community are at elevated risk for depression, anxiety, bipolar disorder, substance use, and suicide. “They’re already dealing with the stigma attached to their gender or sexual identity—and they may not feel they have the energy to address another stigma associated with a mental illness,” which can make the road to recovery from mental illness especially long and difficult, says Lauren Mizock, doctoral faculty at the Fielding Graduate University and a former postdoctoral fellow at BU’s Center for Psychiatric Rehabilitation. In collaboration with her fellowship mentor, Zlatka Russinova, Mizock is exploring the journey to recovery, which involves accepting the mental illness, rather than denying it.

“People who struggle with double stigma need to work through multiple layers of challenges,” says Russinova, a research associate professor of occupational therapy and a senior research specialist at the center. “Often people blame themselves for their illness. They go into a downward spiral of self-blame and are not able to forgive themselves—but self-forgiveness is critical to achieving acceptance,” a milestone in the recovery process.

For a study on acceptance and recovery, Mizock recruited 32 participants with serious mental illness (men, women, racial-ethnic minorities, and members of the LGBT community) who were recipients of services at the center. In 60-minute in-person interviews, Mizock gathered data on three issues: the participants’ sense of themselves as individuals diagnosed with mental illness, their experiences associated with mental illness, and the factors that contributed to their acceptance of their diagnosis. Participants were also asked to define what “acceptance” means to them.

Because this study required examining the perspectives of many individuals—and for those individuals to interpret their own experiences—Mizock used a grounded theory approach to analyze their responses. A common method for investigating the complex experiences and narratives of mental illness, the approach begins with exploratory questions and builds a theory “grounded” in observation and data, as opposed to a more traditional qualitative approach in which a researcher collects data and may impose preexisting theory onto the data. The participants’ responses shed light on their perceptions of themselves, the challenges they faced after diagnosis, and the changes they noticed in themselves once they accepted their illnesses.

The participants identified four components that contributed to their acceptance of mental illness: positive sense of self, acceptance of illness, willingness to seek help, and overcoming shame about illness. For example, Adam described to Mizock “a lack of interest in and acceptance of his gender expression and identity by his therapists.” By switching to a supportive care provider, he began to participate in his recovery. He became willing to learn about managing his bipolar disorder and to pursue effective treatment, accepting, for instance, “that I have to take as much medicine as I do.”

“People blame themselves for their illness. . . but self-forgiveness is critical to achieving acceptance.”

—Zlatka Russinova

Language was equally important for Adam, who developed affirmative ways to describe his identity as a transgender “chameleon,” a term that helped him explain his identity both to himself and to others. “In order to overcome the stigma [of mental illness], one has to integrate this new part of themselves positively into the rest of their identity,” Mizock says, stressing that patients also advance their recovery when they realize they can manage their illness, and that they can help others as a peer counselor or activist.

Mizock and Russinova highlight this study, among others, in their book, Acceptance of Mental Illness: Promoting Recovery Among Culturally Diverse Groups (Oxford University Press, 2016). The book offers tools for clinical psychologists and other providers who care for individuals—across a range of genders, ethnicities, and sexual orientations—with a variety of mental illnesses. Its holistic approach to patient care includes case studies, clinical strategies, discussion questions, and experimental activities intended to help providers facilitate the acceptance process in their clients and foster recovery from mental illness.

With support from an extended community of providers who help people develop tools of acceptance—positive language, supportive relationships, self-confidence, awareness, and education—Adam and others confronting a double stigma are finding it’s possible to transform their perspective from one of shame and denial to one of acceptance and empowerment.

*Name changed for privacy

Read more articles from Inside Sargent, 2016–2017