The diagnosis is not just the death of hope

In memory of Jake, I would like to take up several of the excellent points that Suzanne Beachy highlighted in her guest post. Suzanne's belief about Jake's fate —that it, like many deaths in the so-called "schizophrenia" population, could be directly linked to the dismal diagnosis, is something that I hadn't quite considered in that stark a way. She's absolutely right. From my own experience, I know how the dismal diagnosis, the acceptance by the medical profession of the chronicity of schizophrenia, permeated our household. My husband and I were encouraged by the mental health system to see our son as hopeless. This led us to say the wrong things to Chris, to treat him like a child, to insist on the drugs that the doctors assured us were the only treatment, to cry over his lost opportunities, to get angry with him for constantly eating, to fight amongst ourselves.

One night, several years ago, a few months before he entered the psychiatric hospital for the third time, Chris got hit by a car. He was psychotic. Luckily, he was only grazed. I never told his psychiatrist about this because I was so against the drugs, having seen how little they had helped him, and I knew that the psychiatrist would insist that he go back on them. This was my ill-advised reaction to where the diagnosis had taken us. Chris could have been killed, but I was still in the dark about how to help him get better.

Parental divorce can also be one of the outcomes of the diagnosis. My husband and I, luckily still happily married,  weren't the only ones, apart from Chris, affected by the diagnosis. Try convincing your friends and relatives after you've finally seen the light that your relative will fully recover one day, and you may find they don't share your optimism. They, too, have been affected by the diagnosis. Everybody "knows" that schizophrenia is incurable.

Let's begin with the diagnosis of schizophrenia, which crushes all hope. Suzanne writes: I can remember when he was a newly minted mental patient, admitted to OSU’s psych ward at age 21. I and some of Jake’s other supporters were consulting with the people in white coats about his prognosis which was, in their estimation, either grim or grimmer. They did not want to give us any hope for his recovery. In frustration and wanting to inject some hope into the discussion, my long-time friend Drew, who had known Jake since he was two and had come to the psych ward out of love and caring, said, “Couldn’t it be that Jake has simply had a good old-fashioned nervous breakdown?” The resident snapped back, “There’s no such thing.”

So, a newly minted medical student who has been over-schooled in the psychopharmacology of the brain, but hasn't been on this earth long enough to know about nervous breakdowns or the human spirit, becomes the messenger of doom, the thought leader on how we parents react to the diagnosis and shape our children's lives (for the worse, I may add) for the next decade.

There is no such thing as a nervous breakdown today because, I strongly suspect, drugs had not been invented nor given for such a condition in the past. Best not to call it a nervous breakdown today. Call it schizophrenia, call it bipolar, call it depression, and we've got a drug now or in the pipeline to treat it. The medical student is too young and naive to have figured out that the tail is wagging the dog -- doctors are now doing pharma's work. (See my post on What ever became of the nervous breakdown?)

Suzanne writes: I have also been told by a psychiatrist/former schizophrenia patient that one of the worst places you can take a psychotic young person for help is the psych ward of a teaching hospital, which unfortunately was precisely where Jake landed.

(In the same vein, if you want to avoid a caesarean birth, don't go to a teaching hospital.)

A teaching hospital (CAMH in Toronto) is exactly where my husband and I were coerced into losing all hope about Chris's future. CAMH was about to give him electroshock treatment (no information divulged to us about the controversy), and if I remember correctly, my husband and I were disappointed that Chris was unable to participate in a research study. (He was moving to another country.) But now I know: Medical students could learn a lot from watching Chris's electroshock treatment. Today, I thank my lucky stars that Chris managed to avoid both of these treatments. CAMH is ideally situated a stone's throw from the University of Toronto main campus, and can therefore conduct research on endless streams of young treatment naive male students and their parents.

Suzanne writes: But let me inject some hope back into this story. In the past few years, I have met dozens of people who have fully recovered from “psychotic disorders.” All of them had to break away from mainstream psychiatry in order to find wholeness and healing.

What I appreciate about Suzanne is how positive she remains, in the face of much personal tragedy. If psychiatry refuses to give us hope, we, parents, relatives and psychiatric survivors, can make it our personal mission to show people where hope can be found. Suzanne and I have listened to ex-patients and arrived at the same conclusion -- If you want to be fully recovered, you must break away from mainstream psychiatry and mainstream thinking.