Mentally ill and 'out' but not yet embraced

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Michael Kimber's blog began about two years ago, as a love letter to the girl who stuck with him through his lowest days. In Colony of Losers , he writes how one morning in November, 2009, at the age of 25, he woke up in his Halifax apartment stricken by anxiety so severe he could hardly get out of bed, how his parents paid for a therapist when he was put on a six-month waiting list, how in his wide-ranging search for a cure he tried mood-boosting almonds, happy-themed YouTube videos, mindful mediation and finally antidepressants.

And at the end of all this, he started writing a blog. On March 28, 2010, he lost his not-dream job as a "search engine optimizer," and nearly the girl as well, but the medication had started to work, and he was sleeping again. This was the day, as he puts it, when he realized, "No one could save me. I had to save myself."

By June, he was writing openly about his experience with anxiety and depression. Today, his irreverent, expletive-splattered blog is verging on one million hits and, now living in Toronto and working for a documentary film company, he has signed with a literary agent.

He also receives 3 a.m. e-mails from people hoping he will talk them out of committing suicide. Strangers, learning of his blog, spill their darkest secrets as carelessly as wine at a party – or throw unsolicited advice in his face. He has even heard from a former teacher who kept her own bout with mental illness secret for fear of losing her job. He knows others who haven't told even their own families.

By "coming out," as Mr. Kimber calls it, he is daring people to judge, hoping to force understanding through confession – he is the modern incarnation of the early mental-health advocates who began coming out themselves in the 1980s, when the closet was crowded. Like those early voices, storytellers such as Mr. Kimber may be the best hope of reducing the enduring stigma that people with mental illness are afflicted with.

Not much else appears to be working. Stigma is a term bandied around so often that it has taken on the quality of an incurable disease in its own right.

In 1963, Canadian psychiatrist Erving Goffman wrote a classic definition of stigma, calling it the "spoiled identity" that disqualifies an individual from full social acceptance. There are undeniable issues that develop from a diagnosis of mental illness, especially when symptoms are acute and untreated: People suffering from depression and anxiety have, unsurprisingly, higher rates of absenteeism from work, are more likely to self-medicate with drugs and alcohol. In the manic stage, people with bipolar disorder often behave erratically, experience delusions, or make reckless financial decisions. When Vincent Li beheaded a stranger on a Greyhound bus in Manitoba in 2008, his diagnosis of schizophrenia – and the media frenzy his gruesome act generated – only heightened a public fear of people suffering with psychosis.

But part of the tragedy is that the stigma itself prevents people from seeking out the treatment they need. Yet the longer treatment is delayed – and the more isolated people feel – the harder recovery becomes, a problem made worse by growing waiting lists and bed shortages for psychiatric patients. In Vincent Li's case, for instance, his ex-wife reportedly refused to get help for him, in part, out of concern about how he would be treated, and a lack of understanding about his illness.

Studies in Canada and internationally have shown that attitudes and behaviour toward people suffering from depression and bipolar disorder, and, especially, schizophrenia, have barely budged in the past decade.

In some cases, public awareness efforts may have even entrenched certain misconceptions – stressing the genetic and biological causes of mental illness has also shored up the false belief that that it cannot be successfully treated, and that even patients in recovery cannot be competent employees or reliable tenants. The term "mental illness" has become a misleading catch-all for a range of complex and very different illnesses and disorders. And the most pernicious misconception of all shows little sign of retreat: that the majority of people with mental illness are prone to violence.

In fact, they are far more likely to be victims of violence, or a danger to themselves. And while people with untreated schizophrenia have a higher risk of violence than the population as a whole, these cases are extremely rare, and crimes against strangers are even more so.

Facts aside, and even though one in five Canadians will experience a mental illness, our phobias are firmly entrenched: In a 2008 national survey commissioned by the Canadian Medical Association, one in four Canadians said they would be fearful about being around someone with a serious mental illness. More than half said they would be unlikely to marry someone (or hire a lawyer, child-care provider or financial planner, family doctor, or even a landscaper) with a mental illness.

"There is really very little evidence that there has been a change in the attitudes toward people with mental illness," says Ross Norman, a University of Western Ontario psychology professor who studies the nature of stigma. Research on stigma, in general, has suggested that it originates from a sense that the individual is personally responsible for his or her situation – so in the past decade, for instance, anti-stigma campaigns have stressed the biological and hereditary factors behind mental illness. Subsequent research shows that while people believed the science, it didn't do much to change their attitudes, and if anything it shored up the belief that mental illness was an intractable and unpredictable condition, that, as Dr. Ross puts it, "there was something wrong with their brains."

That's where people like Mr. Kimber, and other well-spoken, professional people come in, Dr. Ross suggests, by countering stereotypes and creating positive role models. "It's probably one of the best ways of making a difference," he says.

People within Canada's mental-health community, including patients themselves and family members who had watched loved ones become lost in the system, began speaking out in the 1980s. Many went on to play key roles in the organizations that now advocate for better treatment and funding. Among those early spokespeople was June Conway Beeby, in Kingston, Ont., who began telling the tragic story of her son who committed suicide in 1981 after a long history with schizophrenia.

"I wasn't going to hide what happened to Matthew," she says. "I wanted people to know that he had a terrible illness, and how we received very poor treatment, very little treatment at all, in fact." Friends and family assumed that her son had been on drugs, that he was the victim of a deal gone wrong. People stopped talking when she passed by at work, or they avoided her completely. "I can make sure the world knows what happened to my precious boy," she thought, and she began giving speeches and speaking out in the media. She didn't spare the details: She found her son in his apartment, lying in a pool of blood with dinner knives plunged through his eyes where he had pounded them into his brain. "Now you know where my efforts come from," she says.

For her, the stigma is slow in changing – the education campaigns often miss the point.

"Prevention is a mug's game," she says. By her reasoning, the surest way to fight stigma is to improve access to treatment and hospital beds, especially for more severe cases of mental illness. Every act of violence highlighted in the media, she points out, sets back any effort to educate the public. "Why wouldn't they feel stigma and fear?"

Political correctness can teach the right language, but how deeply does it change attitudes?

For a decades, Andrea Schluter, now a 47-year-old natural history painter in Vancouver, tried to keep her depression quiet. A graduate student in wildlife biology, she knew all too well what her peers in the field thought: "They equated depression with cowardice, particularly if you were suicidal."

In the 1990s, she was admitted to hospital in a manic state, and felt she had to write about it publicly: "I recall the realization that I had been thrown, violently, into another world," she explains. "And I knew, with every cell in my body carrying the genetic set-up for this sickness of the mind, that I would need to find a way to live in that world."

She wrote a then-rare article for The Globe and Mail's Facts and Arguments page, boldly describing the reactions, both insulting and carelessly hurtful, of the people around her. "I just thought, 'Hang the consequences,' " she says. "I couldn't believe how unenlightened people were."

Her outspoken approach led to a job speaking about workplace accommodation from a first-person perspective.

She feels any stigma about her disease less today. Her fierce openness forces people either to accept her or slip out of her life, she says. But once in a while, she realizes her friends may not be as enlightened as she hopes. She recalls a conversation at a dinner party, in which a friend was critical about a new transition house for psychiatric patients being built nearby: What kind of "mentals" would this bring to the neighbourhood? Ms. Schluter pointed out that she herself had stayed in this kind of housing in the past, and, when the woman refused to back down, she left the party.

"I guess she was so irate, she wasn't picking up on what I was saying," she recalls "There were at least eight other friends in this group sitting around that table. And nobody spoke up."

Meanwhile, as Mr. Kimber's blog continues to draw attention, he is using it as a vehicle to urge other people to share their stories. As he writes, "You have to make the effort to make the world understand. We don't need any more inspiring stories about instant cures and celebrities defeating all the obstacles. We need to redefine what a happy ending is."

Erin Anderssen is a Globe and Mail feature writer.

Related Links:

Michael Kimber's blog, Colony of Losers

A video telling Michael Kimber's story: The Cure Visual Poem

Another Michael Kimber video: Come Out, Come Out, Wherever You Are

From 'evil' to 'mentally ill' in the media

Newspaper stories don't toss around the word "evil" any more to describe people who commit crimes. Instead, as a McGill researcher has found in analyzing five years of Canadian media coverage, readers are more likely to see the phrase "mentally ill" linked to a crime story, especially the most sensational ones.

"In the old days, we would have said an evil person was on the loose, and now people just say a mentally ill person is on the loose," says Robert Whitley, a psychiatrist at the Douglas Mental Health University Institute. "The moral language has been replaced with this medical language. Now [people with a mental illness]seem to be a shorthand way to describe any person or event that is shocking or depraved."

Dr. Whitley led a team of researchers who analyzed nearly 9,000 articles from Canadian newspapers, as well as television news. He says the research, which is yet to be published, found that only 12 per cent of the stories took an optimistic or positive tone about mental health. Another 29 per cent used derogatory language to refer to people with a mental illness; Dr. Whitley cites an editorial on courthouse security, for instance, that referred to "the mentally ill" as "nasty characters." Nearly 40 per cent of the print stories related to violence and criminality, and treatment or recovery was discussed in less than 20 per cent.

But Dr. Whitley says the most surprising finding was the lack of voices in the stories – both in print and TV. Three-quarters of the articles did not quote a mental-health expert, and 84 per cent didn't include a comment from a person with a mental illness. "You wouldn't write an article about hockey without interviewing a player or manager or Don Cherry," he observed.

If the media are the main source of information about mental illness, Dr. Whitley suggests, then current coverage feeds into many persistent misconceptions.

"There is still a skepticism that people with mental illness can be rational and good at their jobs and be a good parent."

NEXT WEEK IN FOCUS: How does having a child with severe mental health problems affect your work and social life? In part 2 of a series, Andre Picard will report on public perceptions of mental illness in the past and present.