“Many people believe that schizophrenia is a frightening brain disease that makes people unpredictable and potentially violent, and can only be controlled by medication. However the UK has been at the forefront of research into the psychology of psychosis conducted over the last twenty years, and which reveals that this view is false,” the British Psychological Society said in a release.
I’m always interested in hearing new perspectives on schizophrenia. My older brother Pat was diagnosed with it nearly 10 years ago. Even on long-term injectable medications, he has had breakthrough positive symptoms every year, sometimes several times a year. An estimated 20 to 60 percent of schizophrenia patients have treatment-resistant or “refractory” schizophrenia. For them, social and occupational recovery isn’t in the charts.
Pat’s not violent. In fact he’s a very gentle, soft-spoken person. He’s highly intelligent, artistic and creative. But he cannot work and sometimes he can’t live alone. He’s socially anxious and rarely leaves the house.
He’s never identified with his diagnosis. That used to mean a lot to me, but in the end it has made no difference. He still sees therapists and doesn’t resist changing his treatment plan. He takes antipsychotics and has adjusted his diet dramatically after they caused him to put on weight.
Accepting the label of schizophrenia hasn’t affected Pat’s openness to treatment. It hasn’t changed his self-awareness. In fact, he is fully aware of the ways in which he isn’t like other people.
The label wouldn’t open doors for him if he wanted to go back to work or back to school. It wouldn’t necessarily help him make new friends or come out of his shell.
“Services should not insist that people see themselves as ill,” BPS urged. “Some prefer to think of their problems as, for example, an aspect of their personality which sometimes gets them into trouble but which they would not want to be without.”
Pat acknowledges that he isn’t living the average lifestyle for a 30-something male. He just says, “I’m weird.” He always was unique, and I don’t think I ever imagined him living an “average” kind of life.
Schizophrenia is different for everyone and so is diagnosis. While some people might see it as a relief and a final answer to their troubles, that’s not always the case.
“Some people welcome a diagnosis because it implies that they are not alone in what they are experiencing,” the report says. “Some are concerned that if others don’t see them as ill, they might blame them (or perhaps their family) for their problems and see them as lacking in willpower or determination to get over them.”
“Thinking of myself as having a chronic and incurable illness robbed me of power and agency and confined me within an essentially negative category,” Peter Campbell told researchers.
“I was told I had a disease,” said another respondent. “I was beginning to undergo that radically dehumanizing and devaluing transformation … from being Pat Deegan to being ‘a schizophrenic.'”
“I am labeled for the rest of my life…I think schizophrenia will always make me a second class citizen… I haven’t got a future,” said another respondent identified only as Henry.
For me, those insights say it all.
Pat is Pat, and his experience with delusions and paranoia are particular to him. It has dramatically shaped his life and our family life. It’s taken a long time to say, but I wouldn’t change him. As long as he is happy, it doesn’t matter what chronic illness he’s diagnosed with.
Pat is a whole person, not a list of symptoms. I accept him for who he is and that means not forcing him to identify with descriptions in a diagnostic manual. I’m proud of the work he has done and continues to do.
His adult life is definitely not average. It’s totally uncharted. He lives in a way that isn’t a carbon copy. No movie opens with a realistic view of Pat’s life, how he starts his day or makes a meal. There’s something enviable in that. I’m surprised it’s not acknowledged more often.