The Stigma Inside Us

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. Not so long ago, I saw a realtor’s ad in a local newspaper headed “Driven Crazy by Your Housing?” that illustrated 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.  A 1960s American survey concludes that they are viewed by the public with “fear, distrust and dislike.” In short, “all things bad.”  Since then, there hasn’t been much, if any, improvement.

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. American surveys of the same period found that the majority of the public blamed mental illness on “lack of discipline,” 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. Worse still, people with mental illness themselves, and their family members share these misconceptions. When I was involved in a global anti-stigma project a few years ago, we conducted a survey of family members in Madrid. It showed that more than half felt that people with schizophrenia should not be allowed to study, drive a car or have children.

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. Your first impulse would be to say it can’t be true.

I was lucky enough to hear Pete Earley talk in Boulder recently.  He is the author of Crazy, an account of what he learned about the US mental health treatment system after his son, Mike, developed a serious mental illness. In a recent blog, he writes about trying to understand why his son didn’t want to take medication for his mental illness. One day, he asked Mike to explain to him, in writing, why this was such a struggle. Mike writes:

Denial was a strong factor in my understanding and even when evidence of my own madness would be presented, my mind would find a way to weave out of the circumstance and an obtuse reasoning would somehow form that would keep my own pride intact. Always two steps ahead of the truth, my brain would tap dance its way into a room where I was not at fault, where it was everybody else versus me, where I was some sort of prophet or special medium who was undergoing visions, not hallucinations, and I was important, not a victim.

It is very hard to understand that one’s own credibility is broken. There is a lot of personal shame one undergoes when they realize that they are no longer in line with society’s understanding of sane. It makes one doubt one’s own instincts and second guess the movements and decisions that one makes. Suddenly, the veil of confidence and ability has been lifted and one is a wreck, struggling to piece together the remnants of what are left of one’s self image.

I learn a lot from my son, Pete Earley concludes. One lesson he has taught me is that taking anti-psychotic medication is much more complicated than being told by your doctor that you have high cholesterol.

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

You can read his entire blog here: Why Won’t You Take Your Mediation 

Denial is a major consequence of the stigma of mental illness that we all carry within us, but when denial gives way to acceptance and shame, there’s a lot more trouble in store.

People who accept the label of mental illness take on a burden. They can see themselves as incapable and worthless. Out of a sense of shame they may withdraw socially from their friends, give up on their careers, academic or marriage plans and, viewing themselves as hopeless cases, become dependent on their treatment providers and others in their lives.

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.

We conducted a study a few years ago in Boulder, Colorado, that showed this to be true – that people who accept the label of mental illness and hold stigmatizing beliefs about it tend to feel  dis-empowered and worthless and don’t do as well as they might.

There are several other studies now that point to the same problem. Insight coupled with a sense of shame about the diagnosis leads to hopelessness, avoiding social contacts and poor self-esteem. Internalized stigma, it seems, undermines the possibility that insight will lead to recovery.

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.

Mental Illness: The Last Stigma

When I entered medical school over 40 years ago we were taught never to say the word “cancer” in front of a patient. The stigma was so great that patients were often allowed to die not knowing what their diagnosis was. The obituary never named the illness.

The same was true of “schizophrenia.” You just didn’t mention it.

Since those days we have shaken off the stigma that cancer carried. People talk about their illness and its treatment openly and get support and information from all sides. We learn about the illness daily from the media.

The same thing has not happened with schizophrenia and other psychotic illness. The stigma of serious mental illness still permeates the fabric of our society.

Most of us know someone close to us, a relative or a friend, who has experienced a psychotic disorder, though, of course, we may not have been told about the problem at the time it was occurring out of a sense of shame or not wanting to hurt the feelings of the person with the illness. But few of us know much about the nature of these illnesses – the causes, the symptoms of the various disorders, the possible outcomes and how to respond to the person with the illness.

It’s not that people don’t want to know. For some years, when I worked at the public mental health center in Boulder we would regularly teach about mental illness in the community. We would talk to the police and judges, who often meet people with mental illness during their working day, and get to answer their many detailed questions.  We would go into high schools with some of our clients who had experienced psychotic illness and have them tell their stories. The students would be on the edge of their seats, filled with obvious interest and empathy.

In the debate on gun control, there is an emerging consensus on one point. The senate and the president agree that we should educate teachers about mental illness. Good idea! But why just teachers? What about their students – the next generation of adult citizens? Many of them are living with someone with a mental illness. Some will develop a mental illness. More will become parents of someone with a mental illness.

We don’t teach about these conditions in school on a regular basis. It is not reliably part of the psychology curriculum. The health curriculum in my local school district is a wonderful program for teaching citizenship skills and how to lead a full and productive life, but it contains nothing about serious mental illness.

The result of this lack of education is that our citizens grow up not being able to recognize the onset of disabling mental disorders in their own children, not knowing what treatments are possible and what benefits they can bring. Often families find out what they needed to know years after the problems develop, and even then, they may not be able to access the information that could help them. The National Alliance on Mental Illness (NAMI) and its many chapters across the US has proven to be a wonderful resource for families in this situation. Their Family to Family program, through which trained family members teach courses for other families on what they need to know about recognizing and managing these illnesses, has been shown to be effective in improving outcome for people with schizophrenia and similar disorders and has become a model for the world.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for these families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.

The forum provides a vital new opportunity for support and education for families and friends of people with mental illness who live in outlying areas of the state where there may be few other resources. We expect that it will be helpful for people who can’t get to support groups because of distance, work or other factors.

To enroll as a user of the forum visit here.You can preserve your anonymity.

The forum is a resource for a people who urgently need information about mental illness. But we must move beyond this and look at how we can educate our young citizens so that this important knowledge is disseminated throughout our society like other vital health information. Including some information in high school health curricula would be an excellent place to start.