PCMH - Struggling with hidden torment

Struggling with hidden torment
Plagued by fears, feeling ashamed and totally alone

The Toronto Star

April 30, 2004

Erin Hodgson had never even heard of the Mood Disorders Association of Ontario when she shuffled into the school auditorium for an assembly about charity week.

Like the other Grade 11 and 12 students at North Toronto Collegiate, she was eager to hear what group the student council had voted to support in its 2004 fundraising drive.

But the announcement meant nothing to her. Until representatives from the mood disorders group started to speak — sharing personal stories about depression and suicide.

She made her way to the podium, faced her peers and started to talk. About things she had never told anyone outside her family. Of her years battling obsessive compulsive disorder and depression. The trauma of living with paralyzing fear and racing thoughts that had plagued her since age 10. Of feeling alone in her torment, so ashamed of an illness that made her feel isolated and "different."

When she finished, there was a hush. Then the 500 or so students stood and applauded.

"I went home and told my mom, `This is a defining moment in my life,'" says Erin, 17, as she recalls the day. "I'm such a shy person naturally, but I wasn't scared."

The assembly was in January and today Erin continues to speak out about mental illness, in hopes that other youth like her won't feel they have to keep silent. She has written about her battle with mental illness in the school newspaper, explaining why the work of the MDAO — which provides peer support, research and public education — is so important. And next Wednesday, she will speak at the organization's news conference to mark mental health week.

"I really want to get it out there. It's not something people should be shunned for," says Erin.

Fellow student Dianne Denton, 17, says Erin "put a face on mental illness." It also prompted others to speak to guidance counsellors and seek help with problems they had been keeping inside.

Ashley Vesely, 17, says the assembly was "a bonding experience" that enabled her and others to start talking about their own fears and struggles. People don't have to understand or fix things, but having a friend to offer support and listen makes a big difference, she adds.

For 17-year-old Jon Lloyd, it was the start of a learning curve about mental illness. "For a long time, just not knowing anything about it actually made me fear it — until this event," he says. "A lot of people just don't want to know about it because they fear it."

Further proof that the students related to the MDAO's mission came in the results of charity week — they raised a $24,502, the most ever for the event.

For mental health professionals and advocates, raising public awareness is key to addressing the growing incidence of mental illness among youth.

The Canadian Mental Health Association says one in five Canadians will suffer a mental illness in their lifetime. Increasingly, that happens in childhood or adolescence with such illnesses as depression, anxiety, bipolar disorder, schizophrenia, addictions or eating disorders.

Earlier recognition is one reason, but specialists say the stresses piling up on today's kids — ranging from poverty to academic pressure to the breakdown of family and community supports — may also be triggering it. Those in the field know early intervention is key to successful treatment, but the lack of resources is a huge barrier.

According to Gordon Floyd, executive director of Children's Mental Health Ontario (CMHO), which represents 82 provincially funded children's mental health centres, demand for services for those under 19 has doubled in the last decade, but funding has fallen.

Floyd says 18 per cent of Ontario children — about 533,000 — are currently suffering a diagnosable mental disorder. Many are unrecognized or unreported because of stigma and shame. CMHO centres have the capacity to serve only 140,000, or roughly one in four.

The result? About 10,000 are on waiting lists and the average wait is almost six months, and up to a year for residential programs.

Part of the problem is too many adults don't think kids' mental health has anything to do with them, he says. "But when I say `eating disorders, bullies, ADHD (attention deficit hyperactivity disorder), and kids disrupting class,' then they can picture kids they know."

The funding crunch coincides with erosion of support and prevention services in the school system such as social workers, guidance and special education teachers and youth counsellors. Combined with zero tolerance for bullying and behaviour problems, this mean more kids are being shut out of the system with no help.

Under the Child and Family Services Act, mental health services are not mandatory and depend on the level of government funding available rather than the need.

"Why is a kid who is suicidal not entitled to the same service as a kid with a broken arm?" says Floyd.

The failure to meet the needs of mentally ill children can lead to dire consequences. Some will die. Among youth between ages 10 and 19, suicide is the second-leading cause of death, behind accidents.

Another danger is addiction. It's not uncommon for youth who feel miserable and alone to start abusing alcohol or drugs as a way of escaping the bad feelings, says Dr. Clive Chamberlain, child and youth psychiatrist and head of the concurrent disorders program at the Centre for Mental Health and Addiction in Toronto. That puts them even more at risk. Marijuana use, for example, has been found to double one's risk of developing schizophrenia, he says. Alcohol exacerbates depression.
Susan Hess, president of Parents for Children's Mental Health, is outraged at the lack of attention to the issue. Hess, who has a daughter with a mental illness, travels the province sounding the alarm for badly needed resources and reaching out to desperate parents.

"How do you tell a mother whose child has killed themselves, `I'm sorry, we didn't have any money to help your child,'" says Hess. "How do you tell a parent whose child is slashing themselves they will have to wait?"

Stigma and loneliness also affects parents and families of kids with mental illness and it's something Hess knows well. The Windsor mother, a widow who raised five children, spent years not knowing what was wrong with her daughter Leah or how to find the right help.

Acquaintances backed away, her other kids stopped bringing friends home and there was no hope of a break from the chaos, because no one wanted to take care of such a "difficult" child.

It wasn't until Leah, at age 13, held a knife to her mother's throat that she finally got the treatment she needed.

"I looked into her eyes and I saw that they were glazed over, that she had no control over what she was doing. I knew then that I really had to do something," Hess recalls. Leah got into a program at Maryvale Adolescent and Family Services, where she was diagnosed with chronic depression, free-floating anxiety and paranoia.

With help, Leah graduated from high school with awards for public service. Today, at 23, she has a part-time job and volunteers at a seniors' home.

There were plenty of nights when Hess cried herself to sleep or when Leah would be awake all night, and her mother and siblings would hold her door closed, and hide the knives and medications.

"If she hadn't got the help she needed I don't know if she'd be here today," says Hess. "And I don't know if I'd be here."
Too often in cases like hers, the illness goes unrecognized, and parents are told by family doctors or teachers that it's their fault for not disciplining, or that their child has a behavioural problem.

"People think our kids are bad kids, that their parents are to blame," says Hess. "When a child is diagnosed with cancer, the school and community surrounds them in a cocoon of support. When a child is diagnosed with a mental illness, everyone is afraid and runs in the opposite direction."

While Hess no longer fears for her daughter, she continues in her crusade to help empower parents and build an advocacy base.
"Parents need to feel they don't have to be ashamed. This is an illness that needs support."

Barbara Everett, psychiatrist and president of the Ontario division of the Canadian Mental Health Association, agrees. She has also long worried about the "impoverished" state of children's mental health services.

"The reality is that families who can buy help are a whole lot better off, so when there's trouble they find a psychologist and they pay the $125 an hour. If you're tossed upon the public system, good luck to you."

Society's failure to provide help only makes the problems worse and the costs to the system higher down the road. Everett says changing the system requires changing the way society thinks. Why do parents find it easier to stand up for juvenile diabetes than for a child with depression?

Hess says society can't afford not to pay attention. "These children are not weeds to be tossed away. If they're given the help they need, they can blossom."