Side Effects

More than forty years ago, during my brother Robert’s first long-term hospitalization for mental illness, my mother would often cry out, “Someday they’ll discover that it was all chemical! You’ll see. Some day they’ll discover that it was all chemical.”

The corollary was clear: if the illness was chemical, then the cure might be chemical too-magic bullets that would not only cure my brother’s illness, but assuage my mother’s guilt. So overwhelming was that guilt that a few years later she left New York City and my brother, and for the remaining twenty years of her life saw him only twice.

Through the first thirty-seven years of his illness-until 1999-Robert was hospitalized more than fifty times, and his longest time outside a hospital was two years. Since 1999, he has not been hospitalized for even a single day. Now sixty-three years old, he lives in a supervised residence, gets around New York City on his own, works five days a week at Fountain House (a community mental-health center), attends family gatherings, and has a life far better than any predicted for him by professionals even a few years ago.

What has made the difference is good care-the staff at his residence is wonderfully attentive to him-and medications. He is on moderate doses of two antipsychotic drugs, and they help control symptoms that were previously out of control. Yet the medications are not without side effects: he is overweight and thus a prime candidate for diabetes; he has Parkinson-like symptoms; he has problems with impotence and incontinence; and he is a chain smoker, with all the problems, including heart disease, that come with smoking.

Thus, when the New York Times ran a front-page story in June-“In Diabetes, One More Burden for the Mentally Ill”-I thought: This is news? What medical burdens don’t the mentally ill have? The article reports that roughly one in every five mental patients develops diabetes (approximately double the rate of the general population); that medications are linked to weight gain and diabetes; that most mental patients do not have a primary-care provider; and that the state watchdog agency responsible for paying attention to such matters has never examined diabetes prevalence or care.

The doctors interviewed by the Times spoke about the importance of testing for diabetes, and the need for people with mental disabilities to eat better and to exercise more. These things are important, but progress will be minimal until a more fundamental problem is addressed: the lack of capable, well-paid staff to care for the mentally ill and help them manage their conditions. People with long-term mental illness die, on average, ten years before the rest of us do. But this shouldn’t be surprising, given the burdens of their lives and the increased burdens that medications bring.

Most of us, if we’re heavy smokers or over-eaters-if depressed or anxious-have people who help us work through our problems: doctors, therapists, family, friends. People with long-term mental illness, however, have usually been abandoned by friends and family, have scanty access to doctors, therapists, or decent medical care. How can we expect them to cope when, in addition to the problems brought on by mental illness, they have nobody to help them on a regular basis?

Even in the best facilities, medical assistance for problems such as weight gain and smoking are minimal. (Heavy smoking is widespread among people with mental disabilities, largely because it provides temporary relief from the grogginess and confusion that often come with mental illness and from medications that treat it.) When, a year ago, I inquired whether Robert could talk with someone on a regular basis about issues not treated by medications, his doctor replied that alas, there were “no resources” for such sessions.

Is it all, then, as my mother hoped, just a matter of chemistry? Is the ultimate answer a pill itself, one that will cure diabetes (along with over-eating, obesity, chain smoking, heart disease, lung cancer, incontinence, and impotence) in the way other pills alleviate hallucinations, depression, and mania? I think not. Some doctors may begin to screen mental patients for diabetes, but until people with mental illness receive regular access to competent medical care, most of them will suffer from what they have always suffered: their symptoms, the side effects of medications that help alleviate their symptoms, and-above all-from shorter lives, neglect, misery, and despair.

Published in the 2006-10-06 issue: 

Jay Neugeboren is the author of twenty-two books, including award-winning books of both fiction and non-fiction. He writes for the New York Review of Books, the New York Times, and the American Scholar. His most recent novel is Max Baer and the Star of David.

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