What it’s like to be a schizophrenic

Press, 11 October 1986, Page 20

What it’s like to be a schizophrenic

October 14 to 20 is Schizophrenia Awareness Week. NIGEL MALTHUS looks at this puzzling and often misunderstood disorder.

A recent newsletter of the Christchurch-based Schizophrenia Fellowship tells the slightly bizarre story of a couple who, secure in the knowledge that their schizophrenic son was being cared for in a southern mental hospital, drove to Nelson for a funeral.

Coming back, somewhere north of Kaikoura they sighted a hitch-hiker trudging up the road in the opposite direction. He looked familiar.. It was indeed their son. Over a cup of tea, he explained that he was fed up “living with all those nutters” and was heading for Great Barrier Island to get away from it all.

Of course, he had no money or spare clothes, and quickly succumbed to the idea of home cooking and a comfortable bed. The next morning, fed, rested, watered, and washed, he cheerfully boarded a bus back to hospital. It’s a story which illustrates the difficulties of dealing with schizophrenia: a surprisingly common yet commonly misunderstood disorder.

The hardest misconception to shake off is the ideal that schizophrenia is split personality. True

split personality occurs extremely rarely. Schizophrenia, however, will affect about one in every 100 people: about. 3000 people in the Christchurch'area alone. The term is actually a generic one for a group of illnesses which distort the way a person thinks, feels, or perceives things. During acute phases, sufferers often have delusions, believing that they have special powers to control events, or that they are someone famous. They may hear voices, taunting them or giving instructions, or suffer strange sensations such as being detached from their bodies.

Some of the more distressing symptoms may be the idea that thoughts are being put into their heads from outside, or that their own thoughts are being broadcast. In between these acute phases,

schizophrenics also suffer paranoia, loss of initiative, and a lack of physical energy. Everyday events can be unusually stressful, and sufferers can find it impossible to make and keep appointments, start something new, or meet new people. Singly, each of these symptoms may not sound too bad, but in combination they add up to nearinsuperable barriers to everyday functioning. It is easy to see how that young man could suddenly and illogically decide that Great Barrier Island was the answer to his needs. Another major misconception is that sufferers are dangerous. In fact, they are seldom violent. It is a very inward-looking disorder, which tends to make sufferers withdrawn and oversensitive. Most live quietly, unable to face the world the rest of us take for granted. It is that withdrawal which can make schizophrenia so difficult to deal with. Mrs Anne Noonan, the founder and a director of the Schizophrenia Fellowship, illustrates some of the difficulties with the story of a man who suffered a relapse a few months ago, deteriorating rapidly over 24 hours. He went to the outpatients’ clinic at Sunnyside Hospital, was given medication and sent home, but could not face even his own home. He spent the weekend sleeping rough in doorways and wandering from place to place. “People who saw him felt sure

he needed help,” says Mrs Noonan, “but he was not considered ill enough for compulsory help.”

What is needed, she adds is a crash pad for such people, somewhere they can go in times of crisis to escape the world, get a feed and a warm bed. ‘“They want to feel safe.”

That particular man was offered a bed at the City Mission, but found even that option too demanding.

‘“Four days would have been enough to put him back on his feet,” says Mrs Barbara James, a field worker with the fellowship, "but we are not big enough to do it.” The nature of the disease means that many sufferers do not have the motivation to seek the help they need. Many can go undiagnosed for year, causing friction and stress within the family, and thereby alienating the people they most need for support. Others may already be under some form of treatment, but still cannot muster the confidence to improve their lives. One woman, known to the fellowship, lives alone in a tinyflat, which Mrs James calls

“small, awful, sunless and cold. A big part of her depression is her accommodation but she’s not motivated to do anything about it.”

Mrs Noonan adds that she has often seen homes where a physically ill person has been living without help, untidy and disorganised — but with obvious signs that he or she has been trying to function normally. By contrast, she says the home of a severely mentally ill person can show “almost nothing there in terms of comfort — no food, no warmth, not enough bedclothes, not one clean garment. This is the case where there is no-one watching them.” Still others actively avoid treatment, and might not get help until their behaviour becomes so bizarre as to attract the attention of the police and the courts. The disease strikes most often in late adolescence. The causes are not fully understood, but biochemical and genetic factors seem to play a part. There is no evidence that childhood trauma causes it, although stressful situatins can cause a relapse once it has developed. Since the late 19505, modern drugs have been used to help treat schizophrenia, but there is no cure. Until the advent of those drugs, many schizophrenics, were confined to long-term hospital treatment. Now, many severely ill people, both schizo-

phrenic and manic-depressive, are treated as outpatients. Sunnyside Hospital runs a number of group homes, where patients live as normal lives as possible, managing their own households under supervision by domiciliary nurses. The Superintendent of Sunnyside, Dr Les Ding, says the trend to community care will soon accelerate in line with Health Department policy. The hospital plans to put more chronic schizophrenics into the community, and cut down the number of long-stay beds. Dr Ding says that will require development of a range of new services and the transfer of some hospital staff to domiciliary roles. The Schizophrenia Fellowship, however, is uneasy over these developments; not because it mistrusts community care, but because it fears community facilities will be inadequate during the transitional phase. It argues that community care must be beefed up before any wards are closed. Dr Ding acknowledges that the transition may be difficult — “It takes as many people to run a half full ward as a full one” — but says the Health Department has promised bridging finance which should allow the hospital to employ some temporary staff. He is “very conscious” of the pitfalls of dumping the mentally ill into an unprepared community. In the United States there

are instances of hospitals turning out patients more on economic grounds than medical. There, says Dr Ding, some studies suggest that 40 to 50 per cent of the homeless are former mental patients. Regardless, though, of the Hospital Board’s good intentions, the fellowship believes it and other support groups will face a rising workload, in a community which still seeks to sweep mental health under the carpet. Another fellowship member, Mr Gordon Tait, points to the paradox that sufferers are genuinely disabled — some grossly so — yet they look absolutely normal. “If one is physically disabled it is immediately apparent and there is sympathy. If one is mentally disabled one becomes a figure of fun and no-one wants to know about it.”

That attitude leaves the Schizophrenia Fellowship struggling for funds, says Mr Tait. It runs stalls, gets “a bit of help” from service clubs, and has had money in the past from the mental health Telethon and from the Lottery Board. But it is all “hand-to-mouth stuff.” Earlier this year the fellowship

thought it might have to close by September for lack funds, but In June was given $50,000 from the Lottery Board. Most of that was earmarked for a special project, developing a correspondence course to teach families how to deal with a schizophrenic relative. Only $lO,OOO was available for the day-to-day working of the branches. Now, just as that is running out, the Department of Social Welfare has announced an emergency grant of $40,000. That has to be shared by the 13 branches; the Christchurch branch will get $B6OO, enough to keep its two part-time staff and numerous volunteers working until next March. Nevertheless, a co-ordinated national appeal for funds is not part of the fellowship’s plans for Schizophrenia Awareness Week. That sort of fundraising is being planned, says Mr Tait, in line with an organisation which still is changing from “a cottage industry to a growth industry.” The themes of awareness week, though, is "Reducing the stigma.” As one of the group’s new publicity pamphlets points out; “Schizophrenia is the most misunderstood of all illnesses. While more is known about physical illnesses and disabilities than ever before, mental illnesses are still either hushed up or open to unhelpful interpretations.”

Everything is too much

Stress within the family

Hand-to-mouth existence