'Schizophrenia is nothing to be afraid of'

Schizophrenics are rarely the homicidal demons portrayed by the media. Glenda Cooper talks to Janey Antoniou, who battles to lead a normal life in the shadow of an incurable illness

Glenda Cooper
Sunday 23 June 1996 18:02 EDT
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In her pine kitchen in north London, Janey Antoniou ticks off her life on her fingers as she waits for the kettle to boil. She is a happily married 39-year-old. She works as a molecular biologist "chopping up bits of DNA and sticking them back together again". She isn't keen on pubs, reads a lot and likes to sing.

She has also spent two and a half years over the past 10 years in hospital, sometimes restrained there against her will. She has made several suicide attempts, has heard voices and attempted to harm herself. Janey is, in short, one of Britain's 250,000 people with schizophrenia.

But the ordinary, sturdily built woman dressed in smart casuals who looks wistfully at the piano (she rarely plays or sings, since her medication interferes with her pitch) bears little resemblance to the demonised care- in-the-community offenders who have been plastered across newspapers. In reality, many schizophrenics are like Janey, living in a middle-class area struggling with an illness that is impossible to cure.

The first thing you notice about Janey's house, which she shares with her husband, Mike, is the silence. Janey cannot watch TV because she thinks it is sending her messages. The remark is off-the-cuff, almost sounding like a joke, but you realise she is being completely serious: she knows the illogicality of her illness but cannot help it.

Janey has suffered from depression since the age of seven. She remembers her childhood as one of confusing signals. "On the one hand we could run wild and do what we wanted outside the house; on the other hand there were a huge amount of rules that had to be obeyed inside. You could roam over the whole area with no one really caring - I once swam in the Thames with my arm in plaster - as long as you were there for meals and did the chores at certain times of the day."

She cannot remember a time when she didn't hear voices. She was first diagnosed at 27, four years after her marriage to Mike, also a molecular biologist, but things had already begun to go awry at university. She says: "I didn't realise that everyone didn't have voices in their head. I'd do odd things, like end up in Edinburgh without any money not knowing how I got there and having to hitch lifts back." (She was at university in Sussex.)

"Hearing my voices is like hearing a television on in the next room," she says. "The voices are very frightening. There are about six or seven of them, male and female voices, and they talk at me and to each other. It's nagging and consistent. There is a running conversation going on, usually saying how evil I am, that I'm unclean, that I should kill myself. There's a lot of abuse both to me and about me."

Scars can still be seen on her upper arms: "The voices used to say why don't I cut myself? And so I did, I would cut my arms until they started bleeding. The voices only ever told me to harm myself, never other people and I never have done."

"Then there are the delusions. I was convinced one time that Colonel Gaddafi had bombed London with an anthrax bomb and I was terrified. I couldn't go out of the house. It was an ordinary work day and people were ringing up to find out where I was and I was saying, 'Go away, go away, go away.' I couldn't bear to go out.

"At the end of the day my brother-in-law came round with his wife, Anne. In my confusion, when she said, 'Let me in, it's Anne', I thought she said, 'It's anthrax.' I was terrified at the thought of anthrax personified coming into my house."

She rolls her eyes. "Of course, it sounds so irrational now but at the time you believe it. You should never say to a person with schizophrenia that's not true. They can't be talked out of it. You have to say things like 'You might think that, but I don't'."

At one stage of her illness Janey says she expected to be back in hospital every six months: "I used to refuse to admit I was ill. I'd go down town and I'd wander around all night, out of control, finally crashing out in a graveyard. Mike would be frantic with worry, poor man - I wouldn't have any money or identification on me. I think he used to be quite pleased when I was picked up by the police. He often used to lock the doors then to try to keep me in the house."

Her spells in hospital were a relief. There she felt she could get help and attention. "Hospital is a place where you can relax," she said. "I've got a lot of good friends on the wards now. It's funny, you can assume it's a place of safety, somewhere you can just forget all your responsibilities. Of course, I have ended up next to the one who's arguing with God all through the night, which is a bloody nuisance, or there was the one who had a habit of eating dry muesli all the time, which was even worse. Everyone's in various stages of illness and you can get frustrated, but I like the people I've been through hospital with."

No one else in her family has suffered from the illness. She has not enjoyed a close relationship with her parents, and her illness, she says carefully, "scares them a little". "When they've looked after me, they're always saying, 'Have you taken your medication?' "My sister and brother have also found it difficult. When I got better after one bad period my sister was crying down the phone, 'I've got my sister back, I've got my sister back'."

Her main support has been Mike: "Of course it's affected our marriage. There have been times when we've drifted apart. There are times when Mike's contemplated leaving. I think he's accepted that I may end up dying and he's come to terms with that. He's been seriously pissed off and angry with me when I've ended up in hospital but at the same time he's taken me down to hospital to have me sectioned. I think I'm very lucky he's still here." They have decided not to have children because of her illness.

A turning point came three years ago, when Janey's latest social worker introduced her to counselling. She has not been in hospital for a year and a half now. "I found it very helpful. I had to take more responsibility for my illness myself. Before, I would get ill slowly and not do anything about it until I didn't know I was ill any more, and someone else would have to take responsibility for getting me into hospital."

One of her problems was that she has been extremely sensitive to the side-effects of drugs, so was often tempted not to take them. She finds it difficult to get comfortable when she is trying to sleep. Her leg twitches slightly as she speaks.

"I know I need to take it. My voices are there all the time, but when I'm on medication they are low. It's like a door has been shut between me and them so the noise is at a manageable level and I can work."

Between the drugs and the therapy she feels that she has made a vast improvement: "I know now to ask for help. I've learnt the early warning signs - such as when I can't figure out how to cross the road any more. The voices get louder and I can't make decisions.

"My life is a struggle partly because I choose to keep on with my job, which is stressful, and any stress makes people get sick. I choose to do it, so it's a Catch 22 situation - if I gave up my job I would get better. But I wouldn't be able to get another job. I choose to work. It's something to get up for in the morning. It gives me the chance to be a normal person. We've got to teach people that schizophrenia is nothing to be afraid of."

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