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Still, the Stigma Remains

People who have overcome schizophrenia and regained their mental health have to contend with society's negative perception of the illness.

March 19, 2001|LINDA MARSA | TIMES HEALTH WRITER

Nina Wouk's early childhood was marked by trouble in school, anxiety attacks and hallucinations. Things got worse in her teens when she was diagnosed with schizophrenia and sent to mental hospitals, where she spent years "totally numb" from the effects of powerful drugs.

Her symptoms gradually abated, and, with great difficulty, she weaned herself from medications. By her late 20s, Wouk began picking up the pieces of her life, though the label of ex-mental patient hampered her efforts: Employers were reluctant to give her a chance, and health insurance companies wouldn't offer coverage.

Today she is a self-described "twitchy" person, with a nervousness that may have resulted from years of taking antipsychotic medications. But the 51-year-old Menlo Park, Calif., woman works in an occupation that is the very symbol of the clearheaded, organized personality that eluded her in her youth: She's an accountant. She also owns a home and has been in a stable relationship for 22 years.

"I am not a crazed killer," she says. "In fact, I'm highly typical" of recovered schizophrenics.

Extensive research conducted in this country and abroad indicates that Wouk's right: The stereotypical tortured souls who wander the streets responding to voices only they can hear are the exception, not the norm.

With the right treatment, more than 75% of diagnosed schizophrenics have a complete or at least functional recovery, experts say. While they may suffer occasional symptoms, they "hold responsible jobs, have relationships and lead satisfying lives," says Dr. Raquel E. Gur, director of neuropsychiatry at the Schizophrenia Research Center at the University of Pennsylvania School of Medicine in Philadelphia.

Today, an estimated 2.5 million Americans--roughly 1% of the population--are diagnosed with schizophrenia. The illness usually emerges between the ages of 13 and 25 and often appears earlier in males than females. Symptoms include disordered thinking, paranoid delusions, hallucinations, and extreme apathy and social withdrawal. The National Institutes of Health pegs the total costs of the disease, including long-term care, at more than $30 billion annually.

Yet many experts say that our mental health system is ill-equipped to treat people with schizophrenia and that the psychiatric profession clings to outdated notions that patients deteriorate, not improve. It's no wonder, they say, that one of every 10 schizophrenics commits suicide within 10 years of diagnosis.

Because the disease carries such a profound stigma, those who do recover often live secretive lives, revealing their psychiatric histories only to their closest intimates. So the public seldom hears about the thousands of success stories.

Instead, we usually hear about headline-grabbing cases such as that of Michael Laudor, the charming Yale law graduate who was a poster boy for recovery from schizophrenia. With a movie deal based on his autobiography reportedly in the works, Laudor stabbed to death his 37-year-old pregnant girlfriend in 1998. According to reports, he had stopped taking his medication. The New York State Supreme Court later committed Laudor to a state mental institution for his crime. Although studies show that even severely mentally ill patients, if they receive treatment, are not any more violent than the average person, the negative image persists.

"I spend so much of my time countering negative images; the label discredits and marginalizes people," says Dr. Dan Fisher, a psychiatrist and former schizophrenic who is co-director of the National Empowerment Center, a patients' rights organization in Lawrence, Mass.

Indeed, some sufferers, like Wouk or Fisher, seem to go into full remission, meaning they have no symptoms and don't need to take medications. Others with residual symptoms learn to ignore them.

"I still hear voices, from the refrigerator, the television, the washing machine--all the major appliances," jokes Bill Compton, who takes medication to control the paranoid delusions that overtook his life when he was 42. Compton, 55, is director of Project Return: The Next Step, a self-help organization for people with mental illnesses.

Compton worked for theater companies in New York and Los Angeles before his psychotic break. He bounced around the mental health system for two years and lived on the street for nine months, convinced that he was waiting to be anointed as an archangel. He landed in a board-and-care home a decade ago, where he began his long climb out of the depths of madness.

Disturbed Patients Were Deemed Hopeless

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