Tragedy spurred her to action

A family tragedy led a Geneva woman to take up the fight against the disease that took her sister away.

For the work she's been doing, Sue Bergeson, 50, was recently honored by the National Association of Social Workers, Illinois Chapter. It named her Public Citizen of the Year in September.

Bergeson was cited for her work as president of the nonprofit Depression and Bipolar Support Alliance, a Chicago-based nonprofit.

Bergeson joined the alliance, the nation's largest patient-led organization focusing on mental illness, after the 1999 suicide of her sister, Barbie Schuh.

An oncology nurse at Delnor-Community Hospital in Geneva, Schuh killed herself at the age of 49. She had been diagnosed with bipolar disorder shortly before her death, Bergeson said.

"We knew she was in a lot of pain," Bergeson said of her family, but they didn't know how to help.

Bipolar disorder is a medical illness marked by extreme changes in mood, thought, energy and behavior. It also is called manic-depression, because the person's mood can alternate between symptoms of mania and depression.

The mood changes or "swings" can last anywhere from several hours to several months. They are caused by abnormalities in brain biochemistry and in the structure or activity of certain brain circuits.

The National Institute of Mental Health reports that one in five people with bipolar disorder take their lives, and that the life span is 9.2 years less than that of the average American.

It can be treated with medicine and therapy. But some patients do not like the way the medicines make them feel, and stop taking them, which can lead to relapses.

Bergeson, who has spent her career working for nonprofits such as the American Osteopathic Association and American General Dentistry, decided to refocus her efforts after her sister's death.

"I have to do something about this illness," she thought.

The alliance provides help to patients (also called consumers), their friends and families, to mental health professionals and medical workers. Bergeson's job duties are wide-ranging: besides raising money for the organization, she helps researchers, speaks to doctors, writes materials for patients.

"Practical help is needed," she said. "We are wanting to be the place people go."

The alliance hands out more than 1 million pieces of educational materials a year, and its Web site, where people can learn about the disease and find help and support, gets 90 million hits a year.

The Chicago chapter's site is www.dbsawest.com.

Bergeson herself has depression, and many of the staffers at the alliance have diagnosed mental illnesses, she said. "So it makes it interesting," she said with a laugh.

It's even interesting that some people prefer to be called "patients" and some "consumers."

Some don't want the stigma or passivity of being labeled a patient, choosing instead to see themselves as partaking of health-care services. Others, Bergeson said, don't see themselves as consumers: "I'm not choosing to have (this) illness."

The award from the social workers surprised her. She values social workers, who see people with bipolar disorder in their lines of work and refer them to the alliance for help and support. "Social workers see DBSA as a really good partner," she said.

All the services offered by the alliance come at no cost.

"People living with this can't afford dues. That's why everything is free," she said."

Bergeson's family supports her work. Her father, Paul, and mother, Esther, are proud that the family is doing something to help others like Schuh. They don't keep it a secret. "They're courageous. They don't flinch. They want people to know," she said. "We miss her."

Bergeson is a busy woman. The day she was interviewed, she had been in Wisconsin, talking to a physician's group about working with veterans with mental illnesses.

The alliance has lobbied for better health insurance coverage for mental health benefits. She's helping to come up with standards for whole health care for people with depression or bipolar disorder, claiming that on average, people with bipolar disorder die 25 years earlier than the national average.

She works with researchers to design projects and to teach them how to engage mental-health consumers. She talks to doctors about how to change their approach to dealing with people with mental illness.

She re-educates the public, who may only know bipolar disorder from what they see on fictional television shows.

A Gallup poll, she said, found that 40 percent of respondents thought that if you had bipolar disorder, you couldn't live a normal life.

People who have the diseases need reassurance too. "They're thinking 'I'm crazy, I'm going to be an ax murderer,' " she said, which leaves them feeling ashamed and avoiding diagnosis.

"It's not a death sentence ... these are totally manageable illnesses," she said.