Schizophrenia - the lone wolf of mental illnesses

There is someone in Parliament House with schizophrenia.

At least, statistically speaking.

Schizophrenia is a young person's illness.

Schizophrenia is a young person's illness.

One in every 100 people suffer from schizophrenia. Of the 5000 people working on the hill when parliament sits, it is very likely that at least one has the diagnosis nobody wants to talk about, even in Schizophrenia Awareness Week.

Why has schizophrenia been called the scariest word in the English language? And why - after years of mental health awareness-raising - are we still unable to talk about it?

When the word schizophrenia is mentioned the go-to image is usually violence - often first designated as terrorism. In these rare incidents, the focus is seldom on how proper treatment for the illness might have prevented an attack. Instead, it is on how others should have been protected.

Perhaps it's time to invite schizophrenia in from the cold.

Recovery is possible

What most people don't know, is anyone diagnosed with schizophrenia, like other mental illnesses, can recover if given the opportunity.

Individuals with the diagnosis can be ordinary and high functioning, have families, and go to work every day. We just never get to hear about them. Because while bipolar and autism are household words, schizophrenia is still the disease that dare not speak its name.

Not being able to speak about schizophrenia compounds the condition. Treating people as social lepers makes them sicker.

In Australia, up to 70 per cent of people who have a first episode of psychosis will have another episode within two years.

More worryingly, Australians diagnosed with schizophrenia have a reduced life expectancy of 32 years.

The threat to our youth

If any other illness resulted in such a bleak outlook for our young people, there would be a call to arms. That we are letting this continue is the real madness.

Schizophrenia is a young person's illness: a diagnosis is generally made between the ages of 18 and 30. This is a crucial time in any person's life - they are just finishing school, just starting university or just going into the workforce.

But if you are diagnosed with schizophrenia in this country, within a short time you will not be participating in work or education; you will have a high risk of homelessness; you will be much more likely to end up in jail, and your anti-psychotic drugs will cause physical twitches, weight gain, drooling, loss of libido and loss of memory. As well as that, you will be five times more likely to be the victim of assault.

Headspace can't help you if you are a young person with schizophrenia because they do not deal with people who are diagnosed with a chronic psychotic illness. The National Disability Insurance Scheme won't help either. As reported by The Guardian, people with schizophrenia are regularly refused NDIS packages. The Schizophrenia Fellowship, which once offered support to sufferers and their families, no longer exists. Hospital emergency departments are useful if you are mid-psychosis but once stabilised you will be discharged without any after-care or discharge plan. In all, our healthcare system is not designed to instil hope for recovery in people diagnosed with schizophrenia. But neither is our social system.

Social disconnect

The worst loss of all for people diagnosed with schizophrenia is the loss of friends. The fear and avoidance of people with the condition is so damaging that sufferers retreat into what anthropologists call "social defeat".

People with schizophrenia often appear to isolate themselves from family and friends. This gives the impression that they do not care about others, but their real difficulties began and continue precisely because of their acute sensitivity to judgments and criticisms - because they care too much about what other people think of them. And of course, in almost any situation, what frightens them most is revealing their condition.

A public service

Everyone knows somebody with schizophrenia. If you include the families and friends of those with the illness, there are one million people in Australia affected by the disorder - and almost every one of them is too frightened to say the word. One thing that might help is if high-functioning individuals with the condition were to "come out."

As Law Professor of the University of Southern California, Elyn Saks, says "we who struggle with these disorders can lead full, happy, productive lives, if we have the right resources." The first and most important resource might be social acceptance. And social acceptance begins with being seen.

Those like Professor Saks are in recovery because of the social status and purpose they have. Most Australians with schizophrenia, for now, don't have this. If you are that person in Parliament House hiding your diagnosis, maybe now is the time to offer your greatest gift of public service. Stand up and dare to say the word. Tell us your story. There are a million Australians who could do with hearing it.

Gabrielle Carey and Julia Brown will deliver a public lecture on the subject on May 31 at 5.30pm at the Humanities Research Centre at the ANU.

  • Gabrielle Carey is the current H.C. Coombs Fellow at ANU and is currently working on a book about the family experience of mental illness.
  • Dr. Julia Brown is a Visiting Fellow at the ANU who has conducted ethnographic research on lived experiences of antipsychotic treatment for chronic schizophrenia in the UK and Australia.