The stigma inside us |
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| Monday, 16 May 2011 |
When Professor Richard Warner spoke at the SRN National Gathering earlier this year, one of the subjects he touched on was internal stigma. What he said connected powerfully with many of the delegates on the day and so we asked Professor Warner to tell us more about the subject and why it matters to recovery. This fascinating and well researched guest contribution asks fundamental questions of cherished psychiatric concepts like diagnosis and ‘insight’ and suggests the need for a new focus on empowerment in mental health services.
 We grow up surrounded by a cultural myth – the stereotype of the person with mental illness. Our news media and daytime TV shows portray people with mental illness as violent criminals or, at best, figures of fun [1]. An estate agent’s ad in a local newspaper asks “Driven Crazy by Your Housing?” and illustrates the message with a snarling face with bulging eyes, wild hair and distorted features. Community surveys reveal that people think of people with mental illness as always being unable to make any rational decisions, incapable, unpredictable and worthless [2]. A well-known 1960s American survey concludes that they are viewed by the public with “fear, distrust and dislike.” In short, “all things bad” [3]. Subsequent research has shown little or no improvement [2]. This stereotype leads on to all kinds of misconceptions about mental illness. Half the people answering a public survey in Britain in the 1990s thought that setting fire to public buildings was a “very likely” consequence of mental illness [4]. American surveys of the same period found that the majority of the public blamed mental illness on “lack of discipline” [5], and believed that people with mental illness were more responsible for their condition than were people with AIDS or the obese or any other stigmatized group [6]. Worse still, people with mental illness themselves, and their family members share these misconceptions. A survey of family members in Madrid revealed that more than half felt that people with schizophrenia should not be allowed to study, drive a car or have children [2]. So, growing up in a world where everyone accepts this myth and shares these misconceptions, what would your reaction be if someone were to tell you that you suffer from mental illness? If you have an ounce of dignity, it would be, “No, not me. I’m nothing like that.” And, of course, you would be right. No-one is like that. But it may take you a lot of time and effort to get past the stereotype, see the illness for what it is, an illness, and see yourself again for the responsible and capable person you are. In fact, the people who accept a diagnosis of mental illness tend to be those who have low self-esteem. Those who feel really good about themselves reject the label and, oftentimes, treatment. But the people who accept the label of mental illness take on a burden. They are likely to see themselves as incapable and worthless. Out of a sense of shame they may withdraw socially from their friends. They may give up on their career, academic or marriage plans and, seeing themselves as hopeless cases, they may become dependent on their treatment providers and others in their lives [7]. Consequently, the person with “insight” into his illness may do less well than expected while those who reject the label of mental illness are more likely to hold on to their ambitions and try to forge ahead with their lives. There is plenty of research to show that people who accept the label of mental illness and have an internal sense of stigma feel disempowered and worthless and don’t do as well as they might. My colleagues and I conducted a study like this a few years ago in Boulder, Colorado [8]. We interviewed 54 people who were in outpatient treatment for serious mental illness and found that those who accepted that they were mentally ill and had a sense of mastery over their lives had the best outcome. The problem, however, was that those who accepted the label of mental illness along with stigmatizing beliefs about mental illness were more likely to have lost their sense of mastery. Internalized stigma, it seems, undermines the possibility that insight will lead to recovery. Similarly, a recent study of 75 people diagnosed with schizophrenia found that those who had good insight into their illness and low levels of internalized stigma demonstrated the highest functioning, but those with good insight and high internalized stigma experienced the lowest levels of hope and self-esteem [9]. Another recent study of over 100 people diagnosed with schizophrenia, demonstrated that an internalized sense of stigma leads to a loss of a feeling of empowerment, social avoidance, hopelessness and poor self-esteem [10]. In yet another recent study of 172 people diagnosed with schizophrenia, the American research team found internalized stigma to be associated a poor sense of empowerment, depression and decreased quality of life [11]. Another group of American researchers has recently shown that people in outpatient treatment for serious mental illness who reveal a high level of self-stigma are more likely to be hospitalized [12]. Psychiatrist Martin Harrow conducted a 15-year follow-up study of 64 people in Chicago diagnosed with schizophrenia which provides more evidence that empowerment is an aid to recovery. A third of their subjects were no longer on medication at the 15-year follow-up point and nearly 20 percent of the whole group had completely recovered from their original illness. Those who were off medication and in recovery were more likely to have had a stronger sense of mastery over their lives when they were evaluated five to ten years earlier [13]. A postal survey about stigma and empowerment was recently mailed to service-users in 14 European countries who were members of an alliance of advocacy groups. Over a thousand diagnosed with schizophrenia or a related psychotic disorder responded. Almost half reported moderate or high levels of internalized stigma, but those who showed evidence of empowerment were less likely to see themselves in this negative light [14]. Mental health professionals have long been trained to help their clients develop insight and to accept their illnesses. It seems, however, that there are two other elements that are vital to recovery that are much less likely to be emphasized in training – empowerment and reducing internalized stigma. On the road to recovery, people with mental illness need to find the information that will help them shake off the stigma, stereotypes and misconceptions that come with the label of mental illness and to access advocacy to combat discrimination. They need to be treated with the respect that will allow them to retain a sense of dignity and to be provided with opportunities for advancement that will show them that they are masters of their own destiny. Richard Warner is Professor of Psychiatry and Anthropology at the University of Colorado, and Director of Colorado Recovery. His presentation to the SRN National Gathering in February 2011 can be viewed here. References 1. Wahl, O.F. (1995) Media Madness: Public Images of Mental Illness. Rutgers University Press, New Brunswick, NJ. 2. Warner, R. (2000) The Environment of Schizophrenia: Innovations in Practice, Policy and Communications. Brunner-Routledge, London 3. Nunally, J.C. (1961) Popular Conceptions of Mental Health: Their Development and Change. Holt, Rinehart & Winston, New York. 4. O’Grady, T.J. (1996) Public attitudes to mental illness. British Journal of Psychiatry, 168: 652. 5. Borenstein, A.B. (1992)Public attitudes towards persons with mental illness. Psychiatric Services, 48: 335-346. 6. Weiner, B., Perry, R.P., Magnusson, J. (1988) An attributional analysis of reactions to stigmas. Journal of Personality and Social Psychology, 55: 738-748. 7. Warner, R. (2004) Recovery from Schizophrenia: Psychiatry and Political Economy, third edition. Brunner-Routledge, New York. 8. Warner, R., Taylor D., Powers, M., Hyman J. (1989) Acceptance of the label of mental illness by psychotic patients: effects on functioning. American Journal of Orthopsychiatry, 59: 398-409. 9. Lysaker, P.H., Davis, L.W., Warman, D.M., et al. (2007) Stigma, social function and symptoms in schizophrenia and schizoaffective disorder: associations across six months. Psychiatry Research, 149: 89-95. 10. Yanos, P.T., Roe, D., Marus, K., Lysaker, P.H. (2008) Pathways between internalized stigma and outcomes related to recovery in schizophrenia spectrum disorders. Psychiatric Services, 59: 1437-1442. 11. Vauth, R., Kleim, B., Wirtz, M., Corrigan, P.W. (2007) Self-efficacy and empowerment as outcomes of self-stigmatizing and coping in schizophrenia. Psychiatry Research, 150: 71-80. 12. Rüsch, N., Corrigan, P.W., Wassel, A. et al. (2009) Self-stigma, group identification, perceived legitimacy of discrimination and mental health service use. British Journal of Psychiatry, 195: 551-552. 13. Harrow, M., Jobe, T.H. (2007) Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications: a 15-year multifollow-up study. Journal of Nervous and Mental Disorders, 195: 406-414. 14. Brohan, E., Elgie, R., Sartorius, N. et al. (2010) Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: The GAMIAN-Europe study. Schizophrenia Research, 122: 232-238. Comments (3)
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written by John Sawkins, August 02, 2011
I found most of Richard Warner's points quite convincing at the SRN conference, but I was left with one basic contradiction: how can "insight" and "empowerment" possibly be reconciled within the same behaviour patterns? (Particularly, since showing insight usually means taking your medication - i.e. doing what you are told to by someone else, not coming to the decision yourself as some kind of enlightened self-interest). That's all about control (by the professionals); nothing to do with the individual being master of his/her own destiny. Self-stigma and lack of independent decision-making are both learnt behaviours - and who is it that fosters such thinking?
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written by James Hunter, June 05, 2011
I value the insight I gain into exploring mental health both from the work of professors such as R Warner and equally individuals who share their personal experiences. My personal view may be simplistic and naive; if a nuclear power station changes it's name in a vain attempt to alleviate public distress does is not remain a nuclear power station with the same perceived risks. Read et al [2004] suggest not to label through diagnosis illness's such as schizophrenia as a specific mental illness. It is suggested in order to challenge diagnosis and the associated stigma experienced, to break down the illness into its individual physical components which can be examined, understood and treated in the context of the individual's personal life.
... written by Janelle George, May 31, 2011
I really feel that the greatest help for people suffering because of stigma going with schizophrenia, be it externally or internally, is to simply change the name. For decades the conortations that are associated with people who have schizophrenia have always been negative. Even I feel, after having spent years in and out of psych. wards, that the term schizophrenia is one that draws a picture of 'no cure' and people in a desperate state of mental health.
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