Stigma shrinks my bubble: a qualitative study of understandings and experiences of stigma and bipolar disorder

Purpose: This study contributes to the stigma and bipolar disorder literature focused on understanding structural, social, and self-stigma experiences from the perspectives of individuals living with bipolar disorder and their family members. Methods: Community-based participatory research (CBPR) principles guided our engagement of individuals with bipolar disorder and community partners in the initiation, development, implementation, and reporting of this study. We collected data through focus groups with individuals living with bipolar disorder (3 groups) and family members (2 groups) during an annual bipolar disorder community engagement event. Thematic analysis was conducted as an iterative process and aided by several research team meetings. Results: Three core themes emerged: (1) explicit and implicit exclusionary practices linked to structural stigma; (2) social stigma (e.g., If my child had leukemia you would all be bringing me lasagna) and; (3) the burden of self-stigma (e.g., What’s wrong with me?) . These findings address issues arising in work, school, social, and health care settings that shape stigma phenomena. Conclusion: Parallels between the present findings and stigma experiences regarding other types of mental illnesses suggest considerable overlap. Individuals with bipolar disorder expressed hope for change that included (a) working with health care professionals who use a psychosocial rehabilitation approach and (b) implementing personal strategies for unloading the burden of self-stigma in their lives. Implications: The conceptualization of stigma as self, social and structural resonated well with the experiences and understandings of study participants. This conceptualization offers a bridge for communication between people with bipolar disorder, their families and health care practitioners and may be a useful framework for guiding efforts to reduce stigma. CBPR principles and lived experiences are crucial elements in stigma reduction endeavors.