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. 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 American 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.
Another recent American 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. 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. 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.
Psychiatrist Martin Harrow conducted a 15-year follow-up study of 64 Chicagoans 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.
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.
What we can do
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.
By Richard Warner, MD
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