If you were a young person grappling with schizophrenia, Jesse Bigelow would be a good guy to get to know.
He has been there: At 19, he thought the devil was speaking to him through the television and he would rant about God to strangers on the street. Desperate, his parents finally called the police and had him admitted to hospital for his own safety.
But he made it through and now, at 33, Mr. Bigelow is trying to help others do the same. He is employed by the Canadian Mental Health Association as a “peer-support” worker – one of a growing number of people who have received mental-health care and want to make the experience easier and more positive for those following in their footsteps.
Mr. Bigelow is paid essentially to listen and offer hope, not answers. If asked for advice – How do I tell a prospective date about my mental illness? Should I go back to work? – he says he will share his experiences rather than his opinion.
Sometimes, he meets parents in the waiting room while their sons and daughters are seeing a psychiatrist, and tries to reassure them. At other times, he simply takes someone for coffee or socializes around the pool table at a group gathering. “People feel safer when I tell my story,” he says. “It's not just about trust, it's about being on the same wavelength.”
Research has shown that contact with someone who has recovered from mental illness can shorten patients’ time in hospital and improve their quality of life. As a result, peer-support workers are increasingly found in hospital psychiatric wards.
“Treating mental illness is not a like a physical ailment, where you write a prescription or bring someone in for surgery,” says Patrick Raymond, who oversees two dozen workers with the Communitas Supportive Care Society in B.C.'s Fraser Valley.
“It needs to be much more holistic than that. Peer-support workers are kind of like the midwife for mental health.”
And like midwives, they have had to fight for recognition from the medical establishment, which forever worries that untrained amateurs may interfere with treatment determined by the professionals.
As a result, the Canadian Mental Health Commission now plans to formalize the role that peer-support workers play by providing a system of accreditation that it hopes will clarify – and therefore elevate – their status.
Advocates envision a system of care in which people struggling with almost any mental illness can find comfort in the form of someone, in a hospital or the workplace, who has overcome it.
Determination rooted in the pain of Rwanda
“The vast majority of people who have gone through a mental-health issue, will tell you that peer support was a lifesaver for them,” says Lieutenant-Colonel Stéphane Grenier, currently on leave from the Canadian Forces and working with the commission, which is financed by Health Canada to develop a national strategy for mental health.
Col. Grenier's task is to expand research into peer support and to help develop the guidelines for certification – and he speaks from experience.
He suffers from post traumatic stress syndrome, a consequence of serving with the United Nations force in Rwanda during the 1994 genocide. Talking to fellow soldiers, he says, assisted in his recovery, but the fact that these conversations took place only by happenstance seemed wrong – especially when he came across military research showing that a lack of social support was a key risk factor for developing a severe mental-health issue.
In 2001, he was instrumental in introducing a formal peer-support program to the Canadian Forces. The idea was that soldiers could speak from a shared experience in a way that civilians, even therapists, could not.
“If I had a dime for every story I heard, someone saying, ‘Colonel, you have no idea how good it is to be sitting across the table from someone who gets it, who gives me hope,' ” Col. Grenier says.
However, he cautions: “This is not a pity party, where I am sad, you're sad, and we are all sitting around in our sadness. It's about hope.”
Now, he wants to bring the same approach to the private sector. This fall, two companies will launch pilot projects in the workplace modelled on the Canadian Forces initiative. They will recruit and train staff members to offer peer support to colleagues who are struggling, often in secret, with problems such as depression and anxiety.
“I think this will pay huge dividends,” Col. Grenier says. “... There are a lot of walking wounded out there.”
But he expects to face a challenge in finding peers willing to go public about what they have been through.
“When you break a leg, you look forward to everyone signing the cast. When you develop a mental illness, you don't want to see anybody.”
That isolation not only prevents employees from getting help until their symptoms become severe, it also leads to lower productivity and higher absenteeism, to say nothing of the stress on their families.
As well as legitimizing their role, training and certifying peer-support workers is designed to address concerns about the impact they may have.
Are they still struggling with their own recovery? Or will they try to exert undue influence on patients' clinical regimens, for example trying to persuade them to stop taking their medication, which is an especially divisive issue in the mental-health community.
But Col. Genier remains confident: “A good peer worker under the model we're developing is someone who is on the fence, who sees both sides.”
Certification would screen prospects to ensure that they are in recovery or managing their illness, as well as set clear guidelines about their role, create a national training standard and define a code of conduct.
The best tactic is to lead by example
When Jesse Bigelow was first diagnosed, there was no peer support for his age group – he got by with the support of friends and family – and he agrees with the idea of certifying people who do what he does.
“I was thrust into peer support without knowing exactly my role,” he says, but experience has taught him that “it's mostly being a role model.”
In fact, “sometimes the most meaningful thing” he can offer is that “people will see me and see how well I am doing.”
THE GOOD LIFE?
Statistics show that moving to Canada makes people sick. What's the cure? Focus on prevention, the experts say
Researchers call it the “healthy immigrant effect.” Newcomers to Canada arrive fit as a fiddle, having been carefully screened by Canadian officials to make certain of it. (Refugees, of course, are a different story.)
But within five years, their rates of mental illness rise to match those of their Canadian-born neighbours. After that, the rates get worse.
There are differences within communities – suicide rates, for instance, decline over time among Chinese Canadians but rise among those from South Asia – but, generally, it appears that life in Canada makes immigrants sick.
“We get all these bright people and we are not keeping them well,” says psychiatrist Kwame McKenzie, who is director of health equity for the Toronto-based Centre for Addiction and Mental Health.
“Why would Citizenship and Immigration spend huge amounts of money so that we have fit, university graduates with $10,000 in their pockets coming to this country, only to let them get ill in five years because health care hasn't done the prevention job? It doesn't make sense.”
For minority communities in Canada, improving mental health has tended to focus on access to care – bringing in interpreters, helping doctors become more culturally sensitive, breaking down the stigma within small communities.
But an anti-stigma campaign that works in one cultural community may mean little to another, and the reasons why people don't seek help are sometimes misunderstood.
When Ontario researchers asked 250 immigrant women what would prevent them from seeking help at a hospital for a mental-health problem, they figured they knew what would top the list: language.
Instead, 70 per cent of the respondents pointed out that, while they didn't expect to been seen by a doctor who shared their cultural background, they were reluctant to go to a hospital where everyone on the staff seemed to be white.
Even as peer support expands, the workers tend to be middle-aged, native-born Canadians – it can be hard to find recruits in minority communities.
Dr. McKenzie suggests a different approach: keep mental health from worsening in the first place. (A strategy, incidentally, that experts advocate for the entire country.)
If we know mental illness is more prevalent among certain communities, he argues, prevention is the least costly approach.
“The question is whether health is an expenditure or an investment,” he says.
“What can we do to prevent people from getting chronic illness that costs a lot of money – we have to deploy ourselves upstream.”
That also means a hard look at why the mental health of immigrants – people resilient and ambitious enough to have make the journey in the first place – crumbles. Dr. McKenzie points to the hurdles they face: higher rates of poverty, unemployment (or underemployment) and housing problems plus a lack of social support.
Addressing these social and economic realities is a key step, but so, he says, is promoting positive mental health – providing culturally sensitive services and community-based programs, ensuring that patients have interpreters when they visit family doctors, who can focus on prevention, and specifically teaching positive mental health in schools.
Prevention has to be in place. Wait five years, and Canadian society has already lost.
Erin Anderssen is a Globe and Mail feature writer.