Monica is 91 and lives in Canberra. She had three children, all of whom were diagnosed with schizophrenia. It was a time when the medical community, as well as the culture in general, had concluded that when a child developed schizophrenia, the mother was to blame. Mothers were given personality tests with the aim of revealing the characteristics supposedly responsible for inducing a psychotic disorder. The term was "schizophrenogenic mother", and the theory was that she had driven her child mad by her own "crazy-making" behavior.
"The attitude of the medical professionals towards me was one of suspicion," says Monica. "I felt as if I was somehow partly responsible."
Although the theory was totally discredited by the 1970s, the ghost of the schizophregenic mother still lingers. As late as the 1980s in Australia, according to Melissa, whose sister was diagnosed with schizophrenia, "Mum was always blamed." And even now, many parents feel guilty when they hear the diagnosis of schizophrenia, believing they must have done something wrong.
"I blame myself all the time for her schizophrenia," says Cate, mother of 18-year-old Lauren. "I should have paid more attention as she was getting sicker. I should have recognised what was happening."
We now understand that schizophrenia is not caused by families, as previously theorised. However, it is still families who overwhelmingly carry the burden.
"Every day you are supporting their mental and physical needs," says Delia, who has a 29 year-old son who was diagnosed at 22. "You become their mental health worker instead of their mum."
"Families are left holding the can," says Dr Sebastian Rosenberg of the ANU's Centre for Mental Health Research. "It's a case of colossal neglect."
Although considered a "low-prevalence disorder", there are approximately 200,000 Australians living with a diagnosis of schizophrenia. If we assume two parents and one sibling for each of those people, that means close to 1 million Australians are impacted. But we hear very little from these families, partly because of the shame and secrecy that remains around the most stigmatised illness of all, and partly because they are rarely consulted.
Even though it is the family who is generally responsible for arranging appointments and overseeing medication, there is often no communication between medical professionals and the carers. This means they are routinely locked out of the decision-making process, rather than being included as a crucial part of the treatment team.
"After years of dealing with the system, I finally learnt that you have to harangue everyone you meet," says Grace, whose son was diagnosed with schizophrenia at 22 following multiple hospital admissions. "And you have to ask questions. Questions like 'What medication is he on? Why? What is the dosage? What does it treat?', and most importantly, 'When can I have a family meeting?'" It took Grace two years to arrange a family meeting with her son's psychiatrist.
This is in stark contrast to approaches in other countries. In Finland, a method known as Open Dialogue involves the family with medical professionals from the very first signs of psychosis in a young person. And in India, a tradition of involving families in treatment has led them to serve as "agents of change" in their community, allowing them to identify other people with mental illness and guiding their family to seek treatment.
In Australia, on the other hand, families are often told about the diagnosis without any supplementary information or follow-up. It is left up to them to research this most mystifying illness and make what sense of it they can. "After my brother's diagnosis I spent the first year researching on the internet," says Adele, who lives in regional Australia. "My parents, as carers, were given a brochure and that was it. There was no follow-up and zero support services."
Even in capital cities, family support is scarce.
"I found it difficult to find information relevant to our situation," says Cate, who lives in Canberra. "The advice I got from family and friends was to seek support from other families in the same situation, but I was never able to find them. It seemed that all the mental health support organisations had vanished or been merged, and there didn't seem to be anything available that was specifically about schizophrenia."
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Cate's impression is right. Support organisations that once existed have indeed vanished. Monica tells of a time when there was strong support for families from the Canberra Schizophrenia Fellowship, which later became the Mental Illness Fellowship. This grassroots organisation, established by a team of parents, offered a help and information phone line, monthly talks and social functions for families. They also created two businesses that provided useful employment to people with serious mental illness: a home maintenance service and a coffee shop called Café Pazzini.
"The people who worked there were happy, felt useful, and were proud of their skills," Monica recounts. When it closed down, the consequences were tragic.
A drop-in centre called The Rainbow was also a lifeline "that kept many lonely people alive", according to Monica. This, too, was closed down.
Schizophrenia is not just a medical condition. It's a social condition. The Rainbow and the Pazzini Café provided fellowship and purpose - essentials for a meaningful life that cannot be provided by medicine or health practitioners.
Families understand this only too well, but despite being the first responders, they are the last to be consulted about priorities for the seriously mentally ill. Those who live with and look after people with schizophrenia on a daily basis can tell us what works and what doesn't.
It's time for policymakers to listen.
- Gabrielle Carey is a non-fiction author known for works such as Puberty Blues. Her most recent book is Only Happiness Here - In Search of Elizabeth von Arnim.
- This week, May 23 - 29, is Schizophrenia Awareness Week.
