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It's All in Your Head

Alex Spence

Around 10,000 New Zealanders suffer from schizophrenia. Alex Spence looks at the reality of living with the disease and reports on the scientists who are still puzzling over it.

Andrea Rangi* lives in a state house in Onehunga, Auckland, with three kittens she fosters for the SPCA.

The house is humble but homely. Thee are throw-rugs over the sofa and faded black-and-white portraits of old relatives.

Rangi offers a seat and rolls a cigarette as the kittens clamber over her guest. Frail but lively, they are her only company.

"They really perked me up when I got them," she says. "I don't really have a lot of friends."

A diminutive woman in her early 50s, Rangi has lived a difficult life. Both her parents were blind. She was fostered around her family. She finished only two years of high school.

Then came alcoholism, drugs, gangs. She worked for a while as a prostitute, and was once forced to flee Auckland after a drug dealer threatened to kill her.

In her early 20s, she had two children, a boy and a girl, but was forced to give them up for adoption and now doesn't know where they are. Harshest of all, perhaps, Rangi has suffered schizophrenia for most of her adult life.

The severest of all mental illnesses, schizophrenia is also the most stigmatised and least understood. In the public imagination, it means multiple or split personalities but the reality is more mundane.

Schizophrenia is a debilitating brain disorder like multiple sclerosis or Alzheimer's, which deprives sufferers of their ability to process information, to concentrate and learn, to express their thoughts coherently, and even to perform basic, everyday functions.

First described by the German psychiatrist Emil Kraepelin in the 1890s as "dementia praecox", or early dementia, the illness typically manifests itself in late adolescence or early adulthood. The symptoms are classified into two groups: the "positive" or psychotic symptoms, which include delusions, hallucinations and scrambled thinking, and the "negative" symptoms, which include social withdrawal, emotional detachment and decreased motivation.

The positive symptoms can be controlled with medication but in the longterm the negative symptoms lead many sufferers to gradually withdraw from society.

According to most estimates, about 1% of the world's population suffers from schizophrenia but accurate figures are difficult to obtain in New Zealand. The most recent data held by the Mental Health Commission, from a 1989 epidemiological study, estimates the prevalence at 0.4% of the population, or 10,500 people.

According to the Ministry of Social Development, there are 7127 people with a diagnosis of schizophrenia receiving a sickness or invalid's benefit, at an annual cost of $88 million. But the Schizophrenia Fellowship believes these figures underestimate the number of sufferers in New Zealand.

What isn't in doubt is the enormous damage the illness inflicts upon those who have it. While psychiatrists estimate that a quarter of those who develop schizophrenia will recover after only one or two psychotic episodes and manage to live normal, productive lives, for the majority of sufferers the illness is a life sentence.

International research suggests unemployment among people with schizophrenia to be as high as 80%. Social workers in New Zealand believe the figure to be higher.

In their torpor and isolation, many people turn to drugs, alcohol, tobacco and gambling.

It's not uncommon to find people with schizophrenia living in seedy boarding houses, on the streets, or in prison. The suicide rate among sufferers is 10 times higher than that of the general population.

People such as Rangi are better off than they were in past decades, when they were locked away in institutions. Doctors know more about the illness, medications are better, mental health services are more enlightened. But Rangi has still held only one fulltime job in her life - in a sheltered workshop where for 12 years she put stickers on videocassettes and packaged headphones for airlines, earning $50 a week on top of her benefit. The workshop "didn't give a stuff" about her or her disabled colleagues, she says, and she eventually quit.

Now she lives solely on her invalid's benefit, most of which she gives to a budgeting services company to manage her bills for her. They give her $180 a fortnight for groceries, half of which she spends on tobacco - her "stress relief". It's becoming increasingly difficult to live on.

"I don't eat meat every night," she says. "Sometimes I go without. Sometimes I don't eat at all. I just have a coffee and a smoke and that's me."

Assuming employers were willing to hire someone with little work experience and a history of severe mental illness, Rangi's symptoms would make it difficult for her to sustain a full-time job without extensive support. She no longer hears voices, as she once did, thanks to her powerful antipsychotic medication.

There are, nevertheless, times she becomes irritable, sleepless, disoriented. During one psychotic episode, she became convinced Onehunga was inhabited by ghosts. Earlier in the year, she suffered another episode but refused to go back to hospital, afraid of what might happen to her kittens without her.

LOOK at a brain scan of someone with schizophrenia. Now compare it to a scan of someone whose brain is unaffected. It's obvious, even to an untrained eye, that the illness causes significant structural damage - tissue loss in the temporal and frontal lobes, enlarged ventricles.

For decades, scientists have believed schizophrenia is the result of an oversupply of a chemical called dopamine, which regulates emotions and motivation.

As a result, most of the antipsychotic medications are designed to target dopamine. But in recent years it has become clear that dopamine is not the only chemical involved and attention has switched to the role of other neurotransmitters: serotonin and glutamate.

Drug companies such as Eli Lilly, which manufactures one of the biggest-selling schizophrenia drugs - olanzapine - are spending hundreds of millions of dollars to create a new generation of medications targeting glutamate.

But what actually causes this imbalance in brain chemistry is not clear. Last century, schizophrenia was at various times blamed on cold, uncaring mothers and repressed homosexual urges - explanations since completely discredited.

Scientists now know that the illness is at least partly biological.

"There is definitely a genetic influence," says Dr Tony Fernando, a psychiatrist at the University of Auckland. "But it's not as simple as we thought it was."

Indeed, the cause of schizophrenia remains an open and highly contested question. There is evidence implicating not only genes but viruses during pregnancy, the absence of certain fatty acids in an individual's diet, cannabis use, stress.

Recent studies have called into question the conventional wisdom that schizophrenia affects all populations equally, suggesting that it occurs five times more often in migrant populations and is more severe in people born in the northern hemisphere summer.

The difficulty in untangling this thicket of complexities has led many scientists to wonder whether schizophrenia is actually a group of illnesses rather than a single illness - a theory rapidly becoming mainstream.

"Virtually all studies and diagnostic approaches treat it as a single disease although there is no evidence to support this assumption," says Dr Will Carpenter, a psychiatrist at the University of Maryland and one of the most respected experts in the US.

Carpenter argues that the failure to address the homogeneity of the illness has been one of the reasons for the slow progress in improving the lives of people with chronic schizophrenia.

"Some scientists are actually wondering, 'Sheesh, we're lumping all these people into this label, and it's very possible we're only seeing the last stage of several disease processes'," Fernando says.
He uses the common headache as a comparison.

"A lot of people experience headaches but to say it's a disease, a singular entity, is clearly wrong. Probably 200 years ago that would have been a common notion. Now we know that a headache is a manifestation of a few possible things: it could be from cancer, in a worst scenario. Or it could be from stress."

Psychiatric medicine's reliance on identifying groups of symptoms as a means of diagnosis is "very superficial", Fernando admits.

Other branches of medicine can perform objective tests to determine a diagnosis. An infectious diseases specialist, for instance, can perform blood or stool tests on a sick patient; he doesn't have to rely on monitoring the patient's cough or fever.

"I think in psychiatry we're still looking at the cough," Fernando says.

In May Dr John Read, head of clinical psychology at the University of Auckland, stirred up controversy with a new book, Models of Madness, disputing the notion of schizophrenia as an illness with a biological basis. The diagnosis of schizophrenia is "completely unscientific", Read argues.
He believes the biological view of schizophrenia has been pushed by drug companies and that symptoms such as delusions and hallucinations are a response to social stressors and adverse life events.

"The way you act, think and feel is largely explainable by what's going on in your life," Read says.
For the past few years, Read has been almost a lone voice in New Zealand trumpeting the role of child abuse as a risk factor in psychosis. According to one of Read's studies, two-thirds of female psychiatric patients and around 60% of male patients had been physically or sexually abused as children.

Most psychiatrists, however, believe that while child abuse is strongly linked to other forms of mental illness, such as depression and anxiety, there is little causal association with schizophrenia. In May, an Australian study published in the British Journal of Psychiatry, looking at the mental health of 1612 abuse survivors, found elevated rates of personality and anxiety disorders but not of schizophrenia.

Moreover, discussion of the role of child abuse in schizophrenia makes a lot of psychiatrists uneasy, recalling the days when the illness was wrongly blamed on poor parenting.

"Most of my patients have not been abused," Fernando says. "Most of my young patients with schizophrenia come from really nice families. That's not to say that it doesn't happen in nice families but I've screened for abuse and there's no evidence."

But Dr Thom Rudegeair, an animated American who heads the psychiatric unit at Auckland Hospital, Te Whetu Tawera, believes Read's research should receive consideration.

When he arrived in Auckland four years ago, Rudegeair says, Read's theories "felt like blasphemy". But gradually he became convinced they had merit.

Psychiatry has focused too much on biological causes and not enough on the "environmental insults" patients have suffered, he argues.

"You do a grave disservice to people when you assume their state of mind has a biological cause."
Ultimately, however, schizophrenia demonstrates how fruitless and pointless the nature versus nurture debate is.

Clearly there are a number of factors involved, both biological and environmental.

Dr Rob Kydd, head of psychiatry at the University of Auckland, gives perhaps the most eloquent explanation of current thinking when he compares it to heart disease: "It has a genetic component but cigarette smoking, unhealthy food and lifestyle all contribute."

More important than determining the cause of schizophrenia is ensuring quality of life for the people who suffer from it - and as Kydd points out, despite scientific advances in the understanding of the illness, society is a long way from achieving that.

"There is still a wide gap between what has been found to be useful and what is actually offered. The mental health system is improving but is slow to turn around."

The prognosis for people in the early stages of schizophrenia is considerably better than it was and hopefully with better medications and services being developed, they can be prevented from sliding into oblivion. They will be better able to hold down jobs, raise families, lead ordinary lives.

Fernando, who works mostly with young people in the first stages of psychosis, is hopeful.

"I have patients with good relationships, who've bought houses, gone to university. They lead full lives, which would have been very, very difficult - 10 or 20 years ago. Twenty years ago a diagnosis meant you had to be in a loony bin."

But for those who have been languishing in poverty and despair for years because of chronic, long-standing schizophrenia, the situation remains bleak.

"The long-term outcome - for this group - is not greatly changed," Carpenter says.

For her part, however, Rangi has not given up hope.

She talks about one day coming off medication, returning to work and becoming "mainstream".

Mainstream is her way of describing a regular, middle-class life: job, house, car, partner, family, friends. She is not the sort of person to feel sorry for herself, nor to have resigned herself to her situation.

"I think of myself as climbing a ladder," she says. "I've got to go step by step."

• Not her real name

For more information and advice:

• Mental Health Foundation: 09 300 7038;
• The Schizophrenia Fellowship (SF) supports families of people with any mental illnesses: ph (03) 366-1909 or 0800 500 363;
• See hospital section of your local phonebook for your district health board's mental health services.
• is an online resource for sufferers of psychosis, run by pharmaceutical company Janssen-Cilag.

Copyright Sunday Star-Times 2004, Used with permission from Fairfax New Zealand Limited.

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