Over the past year since I published my memoir about caring for my brother Paul, who suffered from schizophrenia, I have encountered several misguided but firmly held beliefs that get in the way of understanding our fellow humans who suffer from a severe brain disorder. Here are just a few:
1. If people with serious mental illness (SMI) would take their medication, they would be all right.
Unfortunately, this is not true. For 32 years my brother was loaded up with thousands of pills and subjected to all sorts of talk therapies and counseling. Still he alternately thought he was James Bond, Clint Eastwood or a Mohican Indian (as in, the last of…). He was much worse when he went off his medication, but even on it, he could not hold a normal conversation.
Of people diagnosed with schizophrenia, about 25 percent never achieve any sort of meaningful recovery. About 25 percent have a couple of psychotic episodes but then recover completely. In between, some people manage to make a life for themselves as long as they get good support from their family and community. Others are in and out of hospitals.
2. Many people imagine mental hospitals as houses of horrors.
Most of them have been closed. Since the 1950s and 1960s, and with the advent of modern psychotropic medications, the push has been to get everyone out of hospitals and into scattered housing in the community.Unfortunately, not every patient with a serious brain disorder can make it in the community. They need lifetime housing and care. No one wants to go back to the days of hulking bedlams. Many people with SMI — most of the 50 percent in the middle – do quite well in their own apartment as long as they have the right support. But we need to house the 25 percent — people like Paul — in supportive congregate housing. Those with SMI need a home where, with assistance, they can be the best versions of themselves.
3. There is nothing to do for those who are most severely afflicted with SMI. We ought to just lock them up.
This extreme also is untrue. A large percentage of our prison population suffers from some degree of mental illness. Many of them are seriously deluded. But the violence and punitive atmosphere there can make their symptoms worse.
During the last year of my brother’s life, he was the most lucid we had seen him in over 30 years. He was living in a pleasant nursing home where doctors and nurses made sure he got his medication. Meals and snacks were served frequently, optimizing the effectiveness of the medication. He had a warm bed in clean and cheerful surroundings. Paul’s coherence seemed directly tied to how people around him treated him.
4. Schizophrenia is genetic, but not inherited.
How can that be? I always thought it ran in families. In my family, neither parent suffered from any serious mental illness, and only one of the 10 children developed schizophrenia.
Scientists know almost nothing for sure about mental illness, but it appears that illnesses such as schizophrenia come about due to the confluence of two factors: genetic predisposition and some serious stressors. There appears to be a spontaneous mutation at the time of the creation of the fertilized zygote which creates the predisposition. Yet studies of identical twins show if one develops SMI, there is only a 70 percent chance the identical twin also will develop it.
5. Mental illness is common, we’re just afraid to talk about it.
When my brother first got sick, I didn’t know anyone else who had a serious mental illness. It was all very scary and confusing. But at readings of my memoir, many people have come up to me and told me about their aunt or uncle or cousin or the neighbor’s son. They tend to tell me about their family member or neighbor in a whisper, as if there was something to be ashamed of. There is no need to whisper. Nearly everyone has a family member or knows someone with SMI.
6. Every person with serious mental illness, no matter how difficult or perhaps even scary, was someone’s baby once.
They were someone’s brother or sister, or a cherished and loved niece or nephew. They were a person with hopes and dreams. And they still are.
Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers and Providers. Fourth edition.