05/24/2012 08:31 EDT | Updated 07/24/2012 05:12 EDT

How to Learn About Schizophrenia

Even though Schizophrenia Awareness Day is limited to May 24th, Canadians are exposed to education about schizophrenia all year long. Every time they read a gruesome news article about it, or have a difficult encounter with someone with an untreated psychosis, they receive confusing knowledge. It creates the kind of image of severe mental illnesses that crusaders against stigma would like them to forget.

In the absence of any kind of national public education campaign about psychotic disorders, and the sensible mental health policies that are needed to treat them, this grim form of education will continue. Concerned citizens can quickly cover the basics about schizophrenia by visiting the website of the U.S. National Institute of Mental Health.

Education about psychotic disorders, which afflict three per cent of the population, would certainly help the many families who are thrown into upheaval every year when their children begin to experience bizarre symptoms. This education could decrease the dangerous delays that often hinder people from connecting to the early psychosis intervention programs that exist in some parts of the country.

Also valuable would be detailed first hand accounts of what it's like to live with schizophrenia. Until recently, these accounts have been hard to find in Canada. Now two Vancouver writers have written memoirs that let people intimately experience this agonizing brain disorder.

Sandra Yuen MacKay was one of the first people in Vancouver to share her personal story with schizophrenia over 10 years ago. Through the B.C. Schizophrenia Society's partnership education program, she has spoken to numerous groups of students. Vancouver Coastal Mental Health Services regularly employs her to sensitize new staff to the hard reality experienced by their clients. Her memoir, released last year, however, provides a much fuller picture of how a well-loved teenage girl can slip into psychotic chaos. Her book, My Schizophrenic Life, The Road to Recovery from Mental Illness, helps us understand why it can take years and multiple hospitalizations for someone to finally accept that she needs anti-psychotic medication to achieve stability.

Erin Hawkes, in her newly released memoir, When Quietness Came: A Neuroscientist's Journey Through Schizophrenia, also reveals the many years it took her to accept her need for medication. Her journey was made more difficult by the shifting array of psychiatrists who, with limited knowledge of Erin's history, kept changing her medication.

Following a psychiatrist's poor decision to lower her dose of her anti-psychotics, Erin reports that her returning voices tell her, "Pills, let them go....You are Ours...Quit them." Without medication, Erin returns to a delusional world where rats gnaw at her brain, and people on the streets appear to be decapitated or as ghostly versions of themselves.

Both Sandra and Erin, despite their long, harrowing ordeals and their ongoing challenges, are very fortunate. Daughters of the Canadian middle class, they are blessed with keen intelligence and many talents. Both graduated from university after the onset of their illnesses. However, even with these privileged backgrounds, their accounts of the treatment they have received, both in hospital and in community care, overflow with examples of mistreatment.

It's a credit to the strong foundation and ongoing support provided by their families, and the stalwart partners who entered their lives that Sandra and Erin have survived their ordeals. These, and other families like them, confront many obstacles in the mental health system when they try to be involved in caring for their ill relatives.

Also crucial to Sandra and Erin's recovery is the B.C. Mental Health Act which allowed them to receive the treatment that they sometimes didn't understand they needed. This act is under siege by groups, often funded at taxpayers' expense, that see involuntary treatment as a human rights violation. In Canada, unlike the U.S., people with illnesses who want to be treated in the event of future relapses are not represented by any groups.

These fascinating memoirs offer the public a chance to immerse themselves in the gruelling journey that many people with schizophrenia have travelled. Equally important, the stories show that people with schizophrenia really can build productive, meaningful lives. Both women work part time at jobs they like, and have enjoyed years of stability.

Until the public develops a basic understanding of psychotic disorders informed by current neuroscience, they won't insist that the mental health system develop appropriate policies and resources. These two memoirs, richly informative as they are, will have a hard time representing schizophrenia in the public mind. They have to keep competing with the stories of untreated psychotic illnesses.