Committed

Part 5

by Clea Simon

Part of the problem here is that mental illness is so different from physical illness. In the popular conception of illness, we feel bad when we're sick, and we want to get better. Don't those with schizophrenia, schizoaffective disorder, and bipolar disorder also want to get well? No, say the 3170 people hospitalized against their will this past year in state facilities alone. Some believed that the treatment wouldn't help; some felt that the treatment would be worse than the disease. Others rejected the notion that they were ill at all.

But that reasoning may not be a choice so much as a symptom. A recent study published in the Archives of General Psychiatry found that of 412 individuals with psychoses, 57 percent -- more than half -- of those with schizophrenia were unaware that they were psychiatrically impaired. That is why someone like E. Fuller Torrey, an advocate for health insurance parity and for treatment of the mentally ill, is adamant in his call for treatment, voluntary or not, in his recent book Out of the Shadows (John Wiley & Sons, 1996). Torrey, a research psychiatrist at the Neuroscience Center of the National Institute of Mental Health, focuses on the frequent inability of those with the most serious mental illnesses to recognize their diseases. "Obviously people who do not believe they are sick see little need for medication compliance," he writes. "Yet, for most people with severe mental illnesses, medications are the single most important component of their treatment plans."

In other words, the people who are least likely to take their drugs are the ones who could benefit most from them.

As Ken Duckworth sees it, the issue is more clouded, with the benefits of medication less absolute and the drawbacks more serious. "Take bipolar [manic depressive] disorder," he says. "I want to give them a medication that makes them feel less powerful, less sexy, less funny, less creative. They don't want it. Is that an insight problem?"

Duckworth has a firsthand understanding of the problems that medications can pose. He was placed on Trilafon, an antipsychotic, to counter nausea while undergoing chemotherapy. The side effects, he says now, were horrible, and included a feeling of disconnection and the restlessness called akathisia. In addition, he developed dystonia, a stiffness in his jaw that is reportedly both common and very disconcerting. "People report these symptoms," he says, "and you wonder if that's the medicine or that's the illness. I can say that it's definitely part of the treatment. I had this `Aha!' feeling. This is why people don't like to take this medicine."

Sometimes the issue can boil down to family politics. "Consumers of mental health services are in the classic struggles with their families," says Marylou Sudders, "struggles that I went through with my own parents -- that is, `I can be independent. I'm going to make decisions for myself.' "

But for people with mental illness, those decisions have particularly high stakes. Ally's son Greg has not resumed his medication, and in his untreated state, his psychosis is growing worse. Each day, she doesn't know if he will show up in her living room to stare blankly at the wall. All she knows is that the day is coming when he will become so sick, so out of it, that he will have to be taken away against his will.

For Chrissie, the balance is holding, but it's far from secure. She cannot turn on the vacuum cleaner, because its sound reminds her of the voices of her abusers. She does not dare to question her medications. But for now she is on her own, with her own apartment, free after a fashion to lead her life like any other adult. She, like Ally, knows how quickly this can change. For the state, as for any of us, it's hard to know when to let go.

Back to part 4

Clea Simon's Mad House: Growing Up in the Shadow of Mentally Ill Siblings (Doubleday) was named Book of the Year by the Alliance for the Mentally Ill (Mass.)