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.