What we need is hope, not labels

I am providing this testimony as the carer of someone who has been diagnosed as suffering from schizophrenia in the past, and as a person who has had the diagnosis also. There are three points that I wish to make; the first relates to my own story, the second to that of my wife, and the third concerns the way that I see the lives of many young people today to whom the label is attached.

1. My father was a G.P. who was also qualified as a psychiatrist, and wrote a book about depression. My mother too was a doctor. They both had strongly held medical model views about mental health with which I disagreed strongly. In my late teens I found life difficult to cope with on returning from a trip to India. I suppose I became very paranoid and started to hear voices. I found it really difficult to cope with all this.

My father said that I had a ‘change in personality’ and that I might be developing schizophrenia. I disagreed strongly. I had had a serious bang on the head at the age of eleven when I was hit by a car. In addition there were things going on in the family. I guess all this caused me to be very mixed up, wondering who I was, where I was going in life.

Anyway, I was taken to see a psychiatrist in London, a nice enough chap. He said I was just ‘pathologically shy’ but he had asked if I minded if the students sat in while he interviewed me. I didn’t say anything because I suppose I’m a passive sort of person, but the sight of these guys making notes while I was talking really made me angry, but I couldn’t say or do anything about it.

It was just a really difficult time in my life.

The doctor gave me Librium which I took on just a couple of occasions. Looking back I’m thankful I didn’t take them knowing what I know now. I would quickly have become dependent on them.

All this happened back in the 1960s, and when I tried to get back to college I was a bit of a hero because of all the things that had happened to me, going to India, cracking up, seeing a psychiatrist. That’s just the way it was in those days.

I didn’t finish college and decided to go back to India. In Kabul, however, I met my wife. She was a really beautiful young woman but she was all wound up, strangely attractive, and I fell for her. It happened when I was away that there was a death in the family and I was left a fair sum of money, so we returned to Ireland and bought a farm out West with the idea in our heads that we’d drop out and do our own thing.

2. My wife became pregnant and three days after the birth of our first child she had what they called a ‘puerperal psychosis’. They told me in the nursing home that she’d have to go into a psychiatric hospital, but we both refused and she came home. It was terrifying. She believed she was in hell, and that our son was Jesus, and he had to be given away. In the end I had no option other than to sign her in to hospital.

There I was confronted for the second time in my life with the ‘schizophrenia’ label. Then I was told she had puerperal depression, and since then it changed to ‘schizo-affective disorder’, then ‘bipolar disorder’. During this period, from 1973 to 1976, she had these labels. It was awful.

She was given lots of drugs; her weight increased and she couldn’t stop rocking all the time. She was written off, her life was written off. The doctors gave no advice. They just said ‘You’re cured now, go on and live your life’. She was full of rage at what was happening to her, we both were. She was in turmoil with all this happening, and couldn’t do anything about it.

Then in 1976, I first came across an organization called Grow. It was founded by a priest in Australia, a man called Con Keogh (he died last year). He had problems and ended up with a diagnosis of schizophrenia, but there was nowhere else to turn to, so he went to AA, his life shattered. Then he started Grow.

In 1969 Grow came to Ireland. It had, and still does have, a recovery model, and a medical model. They support the use of the label (schizophrenia) and drugs, but they stress the importance of hope.

Anyway, with their help my wife came off lithium back in 1987 when she was expecting our daughter. She was fine, came off the drug without difficulty, was discharged in 1988 on no medication, and has been fine since.

We’ve both been fine. We have the sort of problems that all families have to cope with from time to time, but I’ve now completed a degree in psychology at UCD, have a Masters in family therapy, and have just completed a PhD on recovery at Trinity.

Recovery is re-enchantment with life.

3. The final point concerns the way I see the label ‘schizophrenia’ affecting people, especially young people, today. There are two aspects to the label that are important here – the way other people see you, and the way you see yourself. Isolation and alienation are important in the origins of schizophrenia, but the label makes it worse.

It ends your dreams for the future and fills you with self-hatred.

It fills me with sadness, frustration and anger to see the way young people, who are like I was all those years ago, are treated. I know lots of young people who are medicated up to the hilt. They are told that their problems are because of a chemical imbalance and over-medicated. Then they are ghettoized, with no hope. It also makes me really angry the way some national charities in mental health follow and support the medical model. It’s very difficult to challenge.

Psychiatric crises are a well of creativity, it can enrich your life as well as terrify you.