Other Side of Anti-Stigma Programs for Mental Illness: The “story behind the story” of consumers in recovery

Developed by the National Alliance on Mental Illness, In Our Own Voice (IOOV) is a nationwide, public education/anti-stigma program that educates the community about mental illness; two trained consumer presenters share structured, personal stories about living with serious mental illness and achieving recovery.  Partnering with a local NAMI affiliate that implements IOOV, the current study investigated how IOOV consumer presenters engaged with In Our Own Voice content and structures, and how the program functioned in consumers’ everyday lives.  Data collection took place during a 12-month fieldwork period using qualitative methods:  54 in-depth and key informant interviews with 21 consumer presenters and 9 key informants, supplemented with participant observations and document analyses.  Informed by the qualitative methodology of grounded theory, the research aimed to develop a theoretical model of how the IOOV program worked for its consumer presenters.  One of nine concepts that comprised the resulting model, “The Other Side,” revealed several themes about recovery from serious mental illness.  All consumers spoke about the delicate balance of recovery and the unrelenting vigilance required to maintain it.  Twelve of the 21 consumers described the lingering effects of past trauma and abuse and same number reported recovering from addiction or compulsive behaviors.  At least 8 of the 21 consumer presenters revealed past sexual abuse.  Most consumer presenters also experienced physical health issues.  Overall, mental illness recovery overlapped with recovery from trauma, addiction and compulsive behaviors, as well as and physical health issues.  Trauma from childhood sexual abuse seemed to carry more stigma than mental illness.