A mother and son’s journey

This is my submission on the devastating impact of the schizophrenia label. My son was first given his label at CAMH.

I am a mother of a son who was given a diagnosis of schizophrenia in December 2003, a son who is doing well today perhaps due to my refusing to buy into the medical model of the so-called ‘illness.’ I wasted a couple of precious years at first because I bought, albeit without much enthusiasm, the costly medical model. I spent the years until now struggling against this model.

There is so much to talk about, that I’ll narrow the focus of this post to the perils of the diagnosis of schizophrenia. The original diagnosis of schizophrenia handed down by doctors who should have known better but didn’t bother to inform themselves, set our family up for needless suffering and prolonged my son’s psychosis. I can’t speak for my son, but I can tell you what the diagnosis did from my perspective.

First of all, this particular diagnosis, an even more stigmatizing diagnosis than other mental health ones, initially killed any hope or belief that my son could get better. I was naive enough to think that the diagnosis was valid, like if you are told you have early stage cancer. I assumed there was some sort of science behind it. I didn’t challenge the diagnosis, although being told that my son would probably need drugs for life never set well with me. How could that be possible? I thought. He’s young, he was well once, he should expect to be well again.

Schizophrenia is the loneliest number. A club of one. It is still ‘diagnosed’ at the rate of one in a hundred. It hasn’t been subjected to diagnosis creep, unlike bipolar and depression. One reason for this is pretty obvious. Being labelled bipolar (schizophrenia’s twin) is an easier sell, judging from all those bipolar celebrities coming out of the closet. ‘Bipolar’ does not carry quite the same stigma. The chances that someone you know is in the same schizophrenia boat at the same time as you are pretty slim. Ten years ago there was so little information about schizophrenia on the Internet, except what the drug companies put forward. I began to retreat into myself. I woke up most nights worried sick. I went on an antidepressant and gained a chunk of weight. I stopped initiating new social contacts. Who could really understand what I was going through? I was told by well-meaning people who didn’t know much about schizophrenia except what they heard, that “the drugs are so much better these days.” Well, if the drugs are so good, I thought, why are the doctors so pessimistic about schizophrenia outcomes?

I began to treat my son as if he were feeble minded. No, not all the time, because I didn’t like hearing myself do this and I was uncomfortable treating him this way, but enough that he must have got the picture that there was no hope for him. There is a research study that shows why I stigmatized my own son. In 1997 Sheila Mehta of Auburn University conducted a fascinating study about whether the disease view of mental illness reduces stigma.

"This study examined the widely held belief that a disease view of mental disorder reduces stigma. Behavioral and self-report measures were used to assess 55 male students’ treatment and attitudes toward another, whom they believed either to be a typical student or to have a history of mental disorder. The mental difficulties were characterized in either disease or psychosocial terms. The results indicate that the way in which mental disorder is represented does have an effect on behavior and on some aspects of evaluation. In general, the disease view did not improve attitudes, except in terms of blame. It did, however, tend to provoke harsher behavior. In contrast, the psychosocial view induced treatment no different from that toward normal others. The results provide little support for the claim that regarding the mentally disordered as sick or diseased will promote greater acceptance and more favorable treatment."

When I wasn’t treating my son as if he were an idiot, perhaps my worried glances and tears sealed his fate for the time being. Not only was I worried about all the bizarre behaviour, I constantly lectured him about the need to take his medication. I watched him down those pills. I often cried in front of him out of frustration mixed with fear. Why, if he didn’t take those pills, he would be one of those non-compliant patients who we are told have worse outcomes! My husband and I challenged his strange and convoluted statements with jaw dropping incredulity registered on our faces. (Again, not all of the time, but some of the time, enough to further damage my son’s already fragile sense of self.) My husband and I often exchanged heated words criticizing each other for not handling the situation properly. It was like some horrible noxious gas had permeated our once happy home that turned us all into the kind of people we didn’t want to be. My husband and I did not agree about the medication, which I felt was an unwanted intruder in our household.

It was bad enough dealing with the aftershock of the diagnosis, but the drugs that came with the diagnosis added insult to injury. My son got fat, for a start. It pained me greatly to see him that way. We replaced his wardrobe several times. The doctors seemed to imply that being fat was a small price to pay for sanity, but my son wasn’t really sane on the pills they insisted he take.

Then there was the fancy day program that my son was enrolled in for two years. This was supposedly cutting edge. The psychopharmacologist who ran it said so. My husband and I entertained high hopes that this program would reintegrate my son back into society, but I soon saw how even ‘compassionate’ care had its downsides for the diagnosed. At our large inter-family group that met every two weeks, I felt like we were back in circle time in kindergarten, except this time my son wasn’t reaching his milestones. The atmosphere in the room full of worried parents was tense, making it difficult for anyone to reach their milestones, myself included! The young people in the program referred to themselves as ‘patients.’ It really doesn’t matter to me what they choose to call themselves —patients, students, or consumers— I am skeptical of a one size fits all approach for psychosis, and this is what these programs often deliver.

There seemed to be no way out for my son, because, after all, the doctors told us that schizophrenia was a chronic, disabling brain disease. My son left the day program as much a mystery to the doctors as when he entered. So much for their belief that this illness can best be managed by professionals or that a program can succeed where individual solutions fail. I was only beginning to get the idea that a program like this is a self-serving platform on the profession’s part.

I got involved with writing and blogging because I saw that there was a gap in the market to be filled. That gap needs to be filled by a holistic book written by a parent, because parents are often the people having the most influence over the choice of treatment. NAMI wouldn’t be where it is today if parents had refused to buy into the biochemical imbalance view of mental illness. There are plenty of other mothers who write books about their child’s schizophrenia, but they adhere to the medical model of the illness. I believe that most of these mothers like the medical model because it excuses them from thinking that their child’s problems could in any way be related to the environment that they grew up in or the way they are treated post-diagnosis. I am not saying that schizophrenia is ipso facto caused by bad parenting (although some parents are obviously not parent material) but rather that the person with the diagnosis is usually the sensitive and most spiritual member of the family who personally takes on the emotional burdens that every family carries with it from generation to generation. This is a common shamanistic interpretation of mental illness that mainstream psychiatry has no time for. Creative people know differently.

“The mistaken and unhappy notion that a man is an enduring unity is known to you. It is also known to you that a man consists of a multitude of souls, of numerous selves. The separation of the unity of the personality into these numerous pieces passes for madness. Science has invented the name schizomania for it.”

I am almost finished writing that book, Holistic Recovery from Schizophrenia: A Mother and Son Journey; it’s all but complete save for the final chapter. The final chapter is to be determined by Chris. He’s twenty-eight, and even with my embracing a holistic approach, it’s been a lengthy process. I do believe we could have shaved a few years off his recovery time if I hadn’t been blindsided by the diagnosis. When someone suffers a breakdown such as Chris had, it’s a long, slow rebuilding effort, because, in all honesty, there wasn’t much substance there to begin with, except a body with a disengaged, but totally fascinating mind. My job is to help Chris to join the living and engage in the game of life. He refused to play before. He’s learning to play now.

“This error of science has many unpleasant consequences, and the single advantage of simplifying the work of the state-appointed pastors and masters and saving them the labors of original thought. In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad; and many, on the other hand, are looked upon as mad who are geniuses…This is the art of life. You may yourself as an artist develop the game of your life and lend it animation. You may complicate and enrich it as you please. It lies in your hands. Just as madness, in a higher sense, is the beginning of all wisdom, so is schizomania the beginning of all art and all fantasy.” Hermann Hesse, Steppenwolf

Life is not a race past milestones. Life is a journey to the wonders of the universe. The mind can take you there.