Thomas R. Insel, MD stated, “Psychiatry is the only part of medicine where there is actually greater stigma for receiving treatment for these illnesses than for having them” (Insel, NIMH Report 2006).
There are many aspects to the stigma surrounding mental illness. It manifests itself as a constellation of attitudes and actions that negatively affect individuals in recovery because of misunderstanding, ignorance and fear from an uninformed public. It creates shame and low self-esteem that can inhibit recovery.
The stigma of mental illness has been around as long as the illness itself. However, anti-stigma efforts have not kept pace with treatments and medication. Stigma presents a barrier to almost every area of recovery. As the United States Surgeon General reported in his landmark 1999 report on mental health, “…the stigma that envelops mental illness deters people from seeking treatment. Stigma assumes many forms, both subtle and overt. It appears as prejudice and discrimination, fear, distrust, and stereotyping. It prompts many people to avoid working, socializing, and living with people who have a mental disorder. Stigma impedes people from seeking help for fear that the confidentiality of their diagnosis or treatment will be breached.”
Current advances in treatment, as well as the powerful message of those in recovery who are working and living in our communities, show us that now is the time to confront the issue of stigma. As the Surgeon General’s report goes on to point out,
“For our Nation to reduce the burden of mental illness, to improve access to care, and to achieve urgently needed knowledge about the brain, mind, and behavior, stigma must no longer be tolerated.” (Sacher, Surgeon General’s Report, 1999)
Examples of the negative impact of stigma are everywhere, even in our own neighborhoods. This was illustrated by a service recipient who had been a successful businessman when he had his first psychiatric hospitalization over 20 years ago, as a young adult. After a three-week absence from his job, he attempted to return to work. He was informed that his services were no longer needed. His absence was shorter than that of colleagues who left on maternity leave or for other illnesses, but due to the circumstances of his hospitalization (it was well known at work that he was now challenged by mental illness) that door closed to him. Today, he is successfully working in peer services. Because of limited opportunities, however, he is quick to point out that he is only earning the same hourly wage he made back in the 1980s. As he summed it up: “At less than $8 an hour, where is the American dream for me?”
Another current situation that illustrates stigma is a neighborhood up in arms about a proposed mental health housing project. A popular local newspaper in that borough has published several articles opposing the housing proposal and its sponsor. At first glance, it might seem that many different points are being considered in the argument of those opposed. They cite safety, appropriateness, zoning and property values. As you might expect, most of these arguments are unfounded. The legal issues cited had been addressed. Steps had been taken to clarify the issues and set the community at ease, but some local politicians aligned with the opposition. In an editorial of the local newspaper, the point was made that the project could make an excellent building for some health-oriented facility, but that a home for more than 50 mentally ill people was unacceptable.
Would the community or its newspaper feel comfortable printing such statements about any other group? Numerous studies, including two recent ones (NYU’s Furman Center 2008 and Elbogen, PhD; Johnson, MD. 2009) show housing for those challenged by mental illness is safe and does not negatively impact property values.
It is not hard to see that news stories sensationalized by the press, involving crimes committed by the mentally ill, increase stigma. It is not hard to see that the overwhelming majority of those stories involve people who were not in treatment at the time of the negative occurrence. Unlike most other chronic illnesses, which garner sympathy and support, the fear of being labeled or misunderstood can be a major barrier to diagnosis, treatment adherence, and recovery. The burden placed on those challenged by mental illness by the ignorance and fear of an uninformed public can impact these areas as well as employment and housing. Fear of being labeled may explain why statistics show as much as 20% of the population will be touched by mental illness at some point, yet on average, those who need treatment wait 8 years to seek treatment, with some waiting up to 20 years, with 1 in 5 of those with serious illness never seeking treatment (Insel, 2006). That’s the bad news. The good news is that there are effective steps to counter fear and stigma that are consistent with the goals and process of recovery.
The government can fund and disseminate anti-stigma efforts, such as public service messages, educational materials and school-based programs. Service providers can employ more effective community relations programs. However, some of the most effective anti-stigma efforts come from recipients themselves. Among the ideas that can help combat stigma:
Public Openness: Recent research suggests the single most effective way to combat stigma is by direct contact. Seminars, art exhibits, and discussion forums where the public can meet with self-disclosing recipients goes a long way to dispelling unwarranted fear and stereotypes (SAMHSA, 2006).
Wellness: Public displays of active symptoms, poor hygiene and poorly maintained health can create misconceptions, fear for personal safety and negative impressions. Since these are the antithesis of recovery, maintaining wellness, even to address arbitrary public perceptions, is consistent with the personal goals of consumers.
Employment: When we work alongside people, we build relationships. Through public openness, the connection made can break stereotypes and serve to educate more effectively than any public service message or pamphlet.
Recovery: It’s the challenge, the goal and the result of your efforts. Recovery erodes stigma. We think of this as POWER: The power for positive change, the power to achieve our goals, the power to end stigma.
Larry Hochwald, is co-chair of the Staten Island Mental Health Council, Coordinator of Rainbow Environmental Services Toner & Ink ; a division of Saint Vincent Catholic Medical Centers, Behavioral Health Services, Residential Services, and co-author of the Stigma Report to the NYC Federation to be included in the New York City Department of Health Mental Hygiene FY2010 Local Government Plan. Nat Etrog, LCSW, is co-chair of the Queens Mental Health Council, Director of St. John’s Episcopal Outpatient Behavioral Health Services, and co-author of the Stigma Report to the NYC Federation. Elaine M. Edelman, LCSW, is the Program Supervisor of the Richmond University Medical Center Seaview Continuing Day Treatment Program.