Several years ago I joined an on-line schizophrenia support group. I was beginning to change my ideas about the diagnosis and I joined the group to meet people in a similar situation. We live in a European city where we are not fluent in the local language and this has limited our reaching out. The only people I knew going through what Chris and I were going through were part of the bi-weekly support group run by the hospital program that Chris attended. Since I was not fluent in the language, contact with other parents was virtually non-existent.
I stayed with the on-line support group for about two years. It ultimately served to harden my holistic position. The regulars in the group were wonderful people struggling daily to cope with what they saw primarily as a disease needing medication. I quickly began to feel quite out of place. The members defined themselves by their diagnosis. They lectured each other on the need to keep on the medication and did not agree with the few people who suggested that there might be another way. It was heartbreaking to see where the medication had brought many of them.
There was one young woman who was approaching her thirtieth birthday. She lived by herself in a rural area. Her father stopped by from time to time to do repairs, but for most of the time she was alone, and this was not a good thing. It pitched her further into psychosis which broke through every so often in the messages she wrote. Her loneliness was overwhelming. She was on so many high dose psych meds it made my head spin. Who enabled her to get to this position? She saw a psychiatrist once a month, but only for a med check. This young woman was very articulate, even through the meds fog. On occasions when she lapsed into psychosis, the group's verdict was to urge her to change or increase her meds. If she was clearly psychotic while on meds, shouldn't it dawn on the members that the meds might be the problem here?
The overuse of meds seemed to be a problem mainly in the United States where so many factors collude in giving people lots and lots of pills and little access to psychotherapy. It was mind boggling to see how badly off these people really were. Multiple pills, multiple diagnoses. Nobody seemed to question whether they truly were all of the labels. "I'm schizoaffective and OCD, with depressive features." No, you're not, I am thinking. You merely have problems that have not been properly addressed.
I began to feel badly for even opening my mouth about an alternative view. Why? Simply because many of the members were my age and at this advanced age, reminding people of what might have been seemed downright cruel. They clung to their diagnoses because to do otherwise might open up regret. The type of people that were in the group tended to be ones who drew comfort from feeling bad. "My brother jumped off a building in the 1970s, said one member, "and he's been in a wheel chair ever since! That's the reality of untreated schizophrenia, don't you get it? Don't talk to me about getting off the drugs!"
I left the group, not wanting to feel bad about a situation I knew I could do something about.