Stigma, agency and recovery amongst people with severe mental illness

Abstract

Evidence suggests that people with a severe mental illness still suffer high levels of stigma and discrimination. However little is known about how people with a severe mental illness manage such stigma. As such, the overall aim of this study is to document and analyze behavioral and psychological strategies of stigma management and control in a sample of people in recovery from a severe mental illness. To meet this aim, we conducted a five-year (2008-2012) qualitative longitudinal study in Washington D.C. Participants were recruited from small-scale congregate housing units ('recovery communities') for people in recovery, provided by a public mental health agency. We conducted regular focus groups at these communities, augmented by in-depth participant observation. Analysis was propelled by the grounded theory approach. A key finding of this study is that stigma and discrimination were not perceived as commonly experienced problems by participants. Instead, stigma and discrimination were perceived as omnipresent potential problems to which participants remained eternally vigilant, taking various preventive measures. Most notable among these measures was a concerted and self-conscious effort to behave and look 'normal'; through dress, appearance, conduct and demeanor. In this endeavor, participants possessed and deployed a considered degree of agency to prevent, avoid or preempt stigma and discrimination. These efforts appeared to have a strong semiotic dimension, as participants reported their developing 'normality' (and increased agentic power) was tangible proof of their ongoing recovery. Participants also routinely discussed severe mental illness in normative terms, noting its similarity to physical illnesses such as diabetes, or to generic mental health problems experienced by all. These behavioral and psychological strategies of normalization appeared to be consolidated within the recovery communities, which provided physical shelter and highly-valued peer support. This fostered participants' ability to face and embrace the outside world with confidence, pride and dignity.

Keywords: Agency; Ethnic density; Mental illness; Peer support; Qualitative; Recovery; Stigma; United States.