POST-TRAGEDY, DEALING WITH THE STIGMA OF BIPOLAR DISORDER

Written by
John Wilkens
12:01 a.m., Jan. 6, 2013
Updated 8:17 p.m. , Jan. 5, 2013

They’ve watched this cycle of tragedy before, the slaughter of innocents and then the screaming headlines, the pointing fingers, the wagging tongues.

Not many people want to talk about mental illness until somebody dies.

But if you or a family member has a severe psychiatric disorder, you live it every minute of every day. And when somebody kills 26 people at an elementary school in Connecticut, or shoves a man in New York into the path of a moving train, or shoots five villagers in Switzerland with a rifle, you brace yourself.

“The first thing we do is we all hold our breath and hope the person isn’t bipolar, because it’s like, ‘Oh man, here we go,’ ” said Muffy Walker, a Rancho Santa Fe resident whose son has bipolar disorder.

Here they go dealing with the stereotype that all mentally ill people are violent, even though studies show that the vast majority aren’t — and that someone who’s mentally ill is far more likely to be a victim than a perpetrator.

Here they go dealing with the myths that mental illness is caused by bad parenting, or that the sick would get better if they just wanted to.

And here they go dealing with the fear, however remote, that one day their child might be the one in the headlines.

“Whenever we have one of these big tragedies, people look at the family and say, ‘Why didn’t they do something?’ ” said Karen McClurg, whose son has bipolar disorder. “Lots of the families have tried, over and over, and it’s hard to get help.

I’ve had police detectives and mental health professionals tell me that the only place for the mentally ill to go to be safe is jail. I can’t begin to tell you how sad that is.”

Walker and McClurg are among the four co-founders, all mothers of bipolar children, of the San Diego-based International Bipolar Foundation, a support group for families. They’ve been working for six years to end the stigmas surrounding mental illness — hosting lectures, publishing a free book, funding research, convincing the Girl Scouts to offer a merit badge in mental-illness awareness.

They wish it didn’t take a horrific killing for people to pay attention to what they go through every day.

‘A disease like any other’

McClurg had never heard of bipolar disorder until her son was diagnosed with it.
At age 6, he was a handful. Angry. Anxious. Afraid of germs. He wouldn’t get out of bed in the morning until his mom mopped a trail to the bathroom sink so he could wash his hands.

“He was our firstborn, so we didn’t really know what to expect but it became pretty clear we had a child here with a problem,” McClurg said.

They went to several doctors and got different diagnoses. This is common with mental illness. He was put on medication, taken off, put on other drugs. A doctor in Orange County finally pinned it down to bipolar, a poorly understood disorder that affects about 5.7 million adults in America, according to the National Institute of Mental Health. It most commonly develops in the late teens or early adulthood.

McClurg’s son is 18 now, a high school graduate and a whiz at computers who once created a website to raise money for bipolar research. He is smart enough to have taught himself Russian and Chinese.

And he keeps threatening to kill himself.

That, too, is common for this particular mental illness, which is marked by alternating episodes of extreme mania and depression. (It’s sometimes known as manic-depressive disorder.) Severe cases include delusions and hallucinations. About 20 percent of all bipolar patients commit suicide.

McClurg said her family feels lucky to have the resources to put their son into various private mental-health and transitional housing programs that cost several thousand dollars a month. They can afford the therapy and the medications, the constant juggling to find the right formula to keep their son stable.

Even then, they sometimes need help. Last month, their son was suicidal, she said. They called the police and reported that he was a danger to himself, a 5150 in legal terms.

He spent Christmas in a psychiatric hospital.

“As a nation, we have to realize that mental illness is a disease like any other,” McClurg said. “It isn’t a personality flaw. People can’t just decide to get better. It deserves the same respect and dignity that people with other diseases get. And we can’t just sweep it under the rug and nobody wants to talk about it until another unfortunate incident happens.”

He doesn’t hide it

Although studies show that only about 4 percent of violent crime in this country can be attributed to people with mental illness, nobody is suggesting that serious brain disorders aren’t a risk factor.

According to National Institute of Mental Health research, the lifetime prevalence of violence among people with a major psychiatric disorder such as bipolar or schizophrenia is 16 percent, compared with 7 percent among those without a mental illness.

Chris Muto doesn’t have to know those numbers to recognize that some people are fearful of the mentally ill.

He is bipolar, and he sees the fear in those who don’t know him well. “Some people associate any psychological disorder with violence,” he said. “They’re worried that I’m going to stab them or something. It’s hard to get them to move past that original idea.”

Muto, 25, grew up in San Diego. He and his parents knew something was wrong with him in middle school, and they went to several doctors who suspected it might be depression or attention-deficit disorder or maybe some combination of things. He was diagnosed with bipolar disorder in high school.

It took several years to get his treatment right and his moods under control, he said. He credits his parents with being supportive and open about his disease.

“They tried to learn a lot without freaking out about it,” he said.

He said he went to the University of San Diego right after high school and struggled, washing out after one year. Then he went to an outpatient program in Florida, where he learned skills — nutrition and cooking, sleep and hygiene — that help him keep his life structured and stable. He also got a community college degree.

Now he’s at the University of Arizona, majoring in chemistry. He’d like to go on to graduate school and then into research.

He doesn’t hide his condition, although it’s not something he brings up right away.

“People usually have an idea what I’m like before I say it. It kind of explains my weird behavior sometimes.”

He finds exercise — running and lifting weights — helps “bleed off energy” if he’s feeling manic. Playing board games with friends helps keep him from feeling isolated and depressed.

But he harbors no illusions about what he’s up against. “There currently aren’t really cures for mental illness,” he said. “There are treatments, but it will never go away. It’s something I will live with forever.”

Attacking the stigmas

The blog post was titled “I Am Adam Lanza’s Mother.” It was written by an Idaho woman named Liza Long shortly after Lanza killed his mom and then 20 children and six adults at Sandy Hook Elementary School in Connecticut.

“I live with a son who is mentally ill,” Long wrote. “I love my son. But he terrifies me.”

She described a 13-year-old boy who adores Harry Potter and collects stuffed animals and flies into such violent rages that she has to hide the knives and has trained her two younger children to run to the car, climb inside, and lock the doors.

Doctors don’t know what’s wrong with her son, she wrote. He’s been on drugs and “a Russian novel of behavioral plans.” Nothing works, she wrote, and one social worker told her the best option was to get the boy put in jail.

The article struck such a chord that it’s still being passed around and discussed on the Internet, three weeks later.

“It was very powerful,” said Walker, the International Bipolar Foundation co-founder and president. “Every one of us knows what that mom has been going through.”

Walker also was moved by the backlash Long received for exposing her son’s problems to the world. She, too, was open about her own son’s illness after he was diagnosed.

“I treated it like diabetes, a disease of another organ in the body,” the former psychiatric nurse said. “If we as parents treat it like there’s a stigma, then my son is going to grow up with it as a stigma. And he didn’t. He’ll tell you he’s bipolar. He’s not ashamed.”

There was a price to pay for her honesty, she said. Her son, now 19, grew up without friends. Never went to a sleepover or a birthday party. Never hung out at the mall. “I’m sure it’s my fault because I’m the one who told them,” she said.

And she’d do it again.

“People are so scared to talk about mental illness,” she said. “That has to stop.”

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