For several years I was a member of on on-line schizophrenia community. Many of my opinions about schizophrenia were formed from what I learned there. After a while, I began to notice that most of the people there were what I would call professional schizophrenics, because they accepted the label and all that is involved with being a patient. They knew everything about medications, but not much about other ways of looking at the problem. In many cases, the meds didn’t work, yet they persisted in trying more. Many of them were taking staggeringly large doses of a number of antipsychotics. To this they added antidepressants and other drugs. Their lives were desperate and generally chaotic. They had abandoned hope.
For many of the members of the group, a lot of the chaos was due to inadequate health insurance or no insurance. This only adds insult to injury by compounding the problems of the mentally ill while bearing no relationship to achieving mental health. Bad health insurance or no health insurance distracts people. They end up fighting with their insurers rather than concentrating on the real issues. They are worn out from the fight. At the same time, they fervently believe that they have a brain disease, so they think there is nothing they can do. They often considered themselves a “special case,” much harder to cure than other people with schizophrenia.
None of these particular problems are insurmountable, though, depending on your attitude. It also helps to have someone who trusts in you and believes in your recovery.
I noticed that the people in the group who were actually doing well were the ones who didn’t consider themselves patients, who had little time for the meds and had found their sanity through either going the vitamin route or the therapeutic route or a combination of both. They were well versed in the principles of Buddhism, Eastern mysticism and shamanic traditions. One man highly recommended reading Don Miguel Ruiz’s The Four Agreements, because he said it helped him come to terms with himself. They liked the group of people termed the “antipsychiatrists,” because the antipsychiatrists “got” the idea that there is a largely psychospiritual element to schizophrenia. Yes, it helps to have a psychiatrist, but I noticed the people who seemed to be in charge of their lives were the same people who were also critical of the role of the psychiatrist in their lives.
These people didn’t generally last long in the group, because not enough people were receptive to their message. A lot of them were blunt in their opinions, therefore not particularly likeable. Yet, these were the people who had recovered and wanted to show other people that they could do it, too. Few seemed to listen.
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Rossa,
Your blogs are fantastic in their clarity and honest description of an experience that could potentially be deemed an immovable obstacle for many parents and caregivers. You determination to seek truth and share that discovery with others is refreshing, and very much needed by many who may (or may not) be willing to accept it.
T.
I used to frequent a forum like the one you describe in this post for a few months, back in 2005, I think it was. I left because I found the belief held by most members that so-called “schizophrenia” was a lifelong, incurable brain disease rather depressing, and very little healing, and because I didn’t feel welcome by the forum’s admins and a few members, who actually were openly dismissive of and ridiculing any attempt to question the bio-model. – And I was far from as sharp a critic as I am today! – It was with bewilderment that I noticed both this, well, hostility towards what I regarded a rather positive message (recovery is possible), and also that quite a few members at the forum were using their drugs’ names and the exact dosage they were on as their signature: John Smith, Abilify, 15 mg“. Like you would expect someone to use their professional title, “Ron Unger, LCSW“. Why would someone want to do that?
In an interview with Larry Simon, Grace Jackson mentiones the reasons why people become “professionals”, i.e. chronically “mentally ill”: the social component is that for some people the identification with a label means that they are eligible for social/financial support, while they wouldn’t be without the label. The biological is that the drugs themselves create chronicity. And the psychological component is that being a “schizophrenic” always is better than not knowing who or what you are. The label provides an identity. Or, as Grace Jackson says, it provides Meaning (capital M) to your life, and makes you feel important. While most people who experience crisis lack exactly this: meaning in their lives, a genuine identity. If you take the label from these people, all they’ve got left is basically nothing. So, they cling to their label, and defend it, as if it were a matter of life and death. And it is, symbolically speaking. Disregarded the fact that the label, too, is a (very) false ego-identification, to use a Buddhist term.
Eckhart Tolle sums it up in this YT-clip: “Let me be special in my misery.”
Thanks for the interesting comments and the link to Eckhart Tolle. I’ve just got to listen to “Let me be special in my misery.” I, too, joined my group, genuinely looking for help, but then I realized that many of the people in it were not wanting to help themselves.