COMING OUT PROUD to erase the stigma of mental illness
Stigma greatly harms the behavioral health of people with mental illness leading to diminished self-esteem, less care seeking, worse mental and physical health, and poor quality of life. Mental health consumers and advocates have learned from other disenfranchised groups that stigma may be overcome and empowerment promoted by embracing one’s identity and coming out with personally meaningful experiences (Corrigan & Kosyluk 2013). Disclosure decisions must be made cautiously however, given many still discriminate against people with mental illness. “Coming Out Proud (COP) to erase the stigma of mental illness” is an innovative approach to decrease self-stigma, promote empowerment, and build the cadre of people with lived experience who challenge the public’s stigma of mental illness. Developed by mental health consumers and advocates, COP is a three session program.
- Session 1: consider pros and cons of disclosure in specific settings; e.g., work, neighborhood, faith-based community. If the person decides to disclose in a specific setting, then:
- Session 2: learn relatively safe ways to disclose; and
- Session 3: craft one’s story to achieve personally meaningful goals.
Creativity and Innovation:
Elsewhere, providers addressed stigma through educational and cognitive interventions which research suggests yields some positive benefits. Unfortunately, these approaches result in unintended consequences including framing stigma as a problem of the person rather than his/her community thereby suggesting mental illness might be something to hide (Link, 2013). Coming Out Proud emerged from lessons learned by other groups with hidden stigmas (such as glbt, as well as people with breast cancer, heart disease, and HIV-AIDS to rectify social injustice [Corrigan, 2014]. Does pride make sense here? It might seem the therapeutic goal is to remove “mental illness” from one’s identity? Pride and Identity, however, is understood in terms of achievement (efforts towards recovery!) and authenticity (for some people, experience with mental illness is part of “who I am”). Research shows many people who identify with and disclose their mental illness report better mental and physical health as well as interpersonal relationships.
Coming Out Proud (COP) is championed by consumer advocates and investigators of the National Consortium on Stigma and Empowerment (NCSE), funded for more than ten years by NIMH. Original ideas were outlined in Corrigan and Lundin’s (2001) Don’t Call Me Nuts…[Tinley Park, IL: Recovery Press]. Three years ago, strategies related to disclosure were developed into the COP manual by a writing group. Feedback was then obtained from consumer advocates in several states, as well as Australia, Canada, and the EU. These are the grassroots change agents with experience in making real world impact to undermine stigma and foster empowerment to better behavioral health. COP aids the readily available community of advocates into leaders, encouraging peers who are motivated to come out of the shadows and led the charge against stigma. COP is a user-friendly program that has been readily adopted by consumer leaders in several settings across the world.
Most Western world governments and many U.S. states have devoted extensive resources to replace the stigma of mental illness with empowerment and self-determination. Central to this work has been supporting peer led advocacy programs meant to champion anti-stigma efforts. NCSE leaders have helped set up, administer, and/or partner with statewide programs in California (the Center for Dignity, Recovery and Empowerment), Wisconsin (Wisconsin Stories of Empowerment [WISE]) and New York (DBSA), as well as the Canadian Mental Health Commission, beyondblue in Australia, SAMHSA’s ADS Center, and the World Psychiatric Association with programs in more than 20 countries. These venues provide established cadres of advocates with lived experience who have provided feedback on the program and committed to its integration into programs. These partnerships promote COP capacity building. The COP team has coordinated selected agents from these programs into a COP technical support group providing free master’s training, fidelity, and outcome assessment.
Coming Out Proud includes an 83 page manual, 58 page workbook, and 13 page fidelity measure. People with lived experience and high school education have been taught the program in an eight-hour session and used it faithful to manual in Europe and the United States. A master trainer program has been developed to yield people with lived experience who are able to lead peers COP. The Master Trainer program has been successfully rolled out in more than a dozen communities in California and is being geared up for similar effort with WISE and NY DBSA. NCSE speakers have presented the program to all our partners as well as another dozen states. Key to COP development has been relevance to cultural and other groups. Towards this end, COP training programs encourage people to frame stories and learning activities in terms of cultural and other personally meaningful minority group experiences.
Research and literature summaries by NCSE consumers and investigators have shown many well-intentioned strategies yield little benefits or actually worsen aspects of stigma and empowerment (Corrigan & Fong, 2014). For this reason, over the past decade we developed, tested, published, and disseminated a battery of measures examining stigma change outcomes. Equally important is developed a user-friendly battery that can be managed easily and reliably by people with lived experience. As a result, a short COP battery emerged examining key outcome domains: self-stigma, personal empowerment, recovery orientation, depression, and care seeking. The battery was used in an RCT conducted in Zurich. A statewide RCT is current on COP in ten sites throughout California using the battery; WISE is gearing up with a similar effort. Partnering with the California’s Center on Dignity, Recovery, and Empowerment, NCSE developed a user-friendly data management and analysis program for peer investigators now being pilot tested.