A Bad State of Mind: Minnesota's fractured mental health system An 'ugly' process The long wait On the front lines Managing the illness The elderly's struggles Five people who make a difference Resources Audio Managing the illness (story audio) Photos Gary Johnson Respond to this story Talk about this story in the MPR News Forum Submit a commentary Help us cover this story

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Managing the illness
by Tom Scheck, Minnesota Public Radio
February 9, 2004

Gary Johnson works at the Eagan Counseling Clinic. He has schizophrenia and helps others manage their mental illnesses. (MPR Photo/Tom Scheck)

While Minnesota's mental health system can often be confusing for those seeking treatment. People who have difficulty managing their illness often end up in the hospital, living on the street or in jail. But mental health advocates say there are many who are managing their illness successfully.

St. Paul, Minn. — The Eagan Counseling Clinic is a one-stop center for people with a mental illness. The center offers direct one-on-one counseling, group sessions and a drop-in center where people who have severe and persistent mental illnesses can visit. They can play cards, put together a puzzle or sit and talk about the day's events.

Managing a mental illness is a life-long process. There are no drugs that can effectively cure a mental illness, but some can control the effects. Some clinic regulars were diagnosed with a mental illness a half a century ago when shock treatments were the norm. Others have been diagnosed in recent months. Many are on disability and don't work. Others have a part time job. Nearly all say they've struggled at some point with the mental health system.

JUST GET OVER IT?

Jamie, 32, has bipolar and anxiety disorder, which causes extreme shifts in mood, energy and functioning.

"People don't comprehend the issues with mental health," Jamie said. "The ability to get up and go out and work. And personal hygiene, those are real issues. You wouldn't tell a diabetic who's having real issues to just get over it..."

Many of the people who come to the drop-in center had troubles with employment, housing issues and other daily problems of living with mental illness.

Larry was diagnosed with schizophrenia in 1972. He spent some time in the hospital emergency room in recent months to get treatment for his disease. He says the drop-in center is a needed relief because he can talk with others about his problems.

"When I first started coming here I felt real good," Larry said. "Then I would come home to the apartment and feel lonely for the people here. "That affected my mental illness. As long as I come here, I'm doing fine."

FROM SOMEONE WHO KNOWS

Gary Johnson works with many of those who come to the counseling center. He's been working at the clinic since the early '90S. Johnson helps them deal with day-to-day issues like problems with health insurance or possible side effects of medicine.

"I don't think there's a person out there who's taking meds for schizophrenia who hasn't tried to stop treatment," Johnson said.

Johnson, 53, should know. He was diagnosed with schizophrenia in the early '70s. He says he struggled with the disease, the side effects of certain drugs and how people perceived his illness.

If there isn't some feeling that at some point I'm actually going to get better, and I'm going to feel good about myself again. If you don't have that, not much else is going to sink in. - Gary Johnson

"The thing that I always tell people about schizophrenia is it destroys the one thing that most people rely on," Johnson said. "To make judgments and run their lives. If you have a mechanism -- your brain -- that you can no longer rely for sound reasoning, how in the world are you going to run your life?"

Johnson says his schizophrenia causes extreme paranoia, anxiety and grandiose thoughts. He compares the paranoia to a child touching a hot stove for the first time. He says the child learns to stay away from the hot burner. But someone with extreme paranoia is so fearful of burning himself that he'll decide against cooking altogether.

Johnson says the early stages of his illness were problematic. He says his first doctor misdiagnosed his illness. He also had problems with medication. Johnson says some of the drugs would make him tired all the time. Others would make him want to crawl out of his skin.

Johnson says the illness upended his life. He went through a traumatic divorce and floated in and out of dozens of jobs. He says it took him some time but he realized that he wasn't going to be the person he once imagined. He decided that he couldn't manage his illness and work full time. He's now working fifty hours a month at the counseling clinic, using his experiences to help others.

"If I was aware of what some of the other stories were early on. I don't know if I would have done as well," Johnson said. "Ignorance was an ally to me because I felt like I could do what I needed to do to succeed and I'm not sure... if I would have known the actual track record for most people, I don't know if I would have done as well."

Johnson says his family provided him with strong support. His father encouraged him to go back to school and find a full time job. Both of his parents worked with doctors, organized support groups and helped Gary when he had a bad day. Gary's brother and sister also helped. He says his brother provided him with room and board while he was attending the University of Minnesota.

Johnson says he wouldn't have been able to cope with his illness if his family wasn't there to help. Advocates for the mentally ill say strong family support, good genes and sometimes luck can be a significant advantage for managing their illness.

AN ILLNESS IS AN ILLNESS

Sue Abderholden says it's common for people to have problems with housing, accessing services and knowing where to look for the best available treatment.

Abderholden, the executive director of the Minnesota chapter of the National Alliance for the Mentally Ill, says the public needs to understand that mental illnesses are just as severe as other illnesses.

"When you see someone in a wheelchair, you understand that you might need a ramp to your building to get into the front door," Abderholden said. "It doesn't automatically come to your mind the types of things you have to do for someone with a mental illness."

These days, Johnson works two or three days a week, mostly in the afternoon. Before work, he always stops at the same fast food restaurant to get lunch.

He says the stop helps him acclimate himself to the outside world. Johnson says he chooses to work in the afternoon because his medication can take several hours to kick in.

People who work along side Johnson says he's a tremendous help with their clients. Eagan Counseling Clinic Executive Director Kristen Schmidt says Johnson can provide a perspective to clients that she and others can't.

"It gives them hope that their lives can be still full, they can still carry jobs, they can live out their dreams," Schmidt said. "I've talked to Gary about that many times that he is giving them hope because a lot of our clients aren't seeing people who have mental illness as being successful."

MENTAL ILLNESS DOESN'T GET CURED

But even being successful of managing a mental illness takes constant vigilance. As recently as November, Gary Johnson found himself in the hospital. He started taking a new drug to replace one that made him drowsy, but it also brought back the paranoia. When he recognized the problem, he went to the emergency room and checked himself in. Psychiatrists changed his medicine and he's doing much better.

Johnson has also had problems working with his insurance company. In the early '90s, his HMO, Blue Cross Blue Shield, forced him to switch psychiatrists even though he and his doctor objected. He says he ended up in the hospital for six months because his new psychiatrist missed symptoms his old doctor would have noticed.

"It would be like your father," Johnson said. "If you came home and something was troubling you, your dad would probably send it away before a stranger on the street. He would pick up on things that a stranger doesn't. Well the same thing is true for a doctor."

Johnson says he's happy with the way things are going. He's in a successful relationship and became a grandfather in the last year. He says his one bit of advice to others struggling with a mental illness is to have hope.

"If you don't have hope, hardly anything else matters," Johnson said. "If there isn't some feeling that at some point I'm actually going to get better, and I'm going to feel good about myself again. If you don't have that, not much else is going to sink in."

Johnson says his illness taught him to be more patient. He also says it's important for he and others to talk about their mental illnesses. Johnson says it will become less of a stigma if people realize that there are many people who have learned to live with a behavioral disorder.

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