Not Everybody Recovers

No mental health expert nor any of the eight recovered schizophrenia patients interviewed for this story would suggest that recovery or even marked improvement is possible for all the 2.2 million Americans afflicted with the confounding illness that typically strikes in late adolescence or early adulthood.

Sometimes schizophrenia, which is believed to result from an elusive combination of biological and environmental factors, is simply too severe. In other cases medications have little or no effect, leaving people vulnerable to suicide, which claims more than 10 percent of those diagnosed, according to epidemiological studies.

For others, mental illness is complicated by other serious problems: substance abuse, homelessness, poverty and an increasingly dysfunctional mental health system that favors 10-minute monthly medication checks, which are covered by insurance, over more effective but time-consuming forms of support, which are not.

The improvement seen in many schizophrenia patients as they reach their fifties and sixties generally affects only the most acute psychotic symptoms such as vivid hallucinations and imaginary voices. Patients rarely revert spontaneously to the way they were before they got sick, experts say, and many in whom the disease burns out are left with the emotional flatness and extreme apathy that also characterize schizophrenia.

While a growing number of mental health workers agree that recovery occurs, there is no consensus on how to define or measure it. Academic researchers typically adhere to a strict definition of recovery as a return to normal functioning without reliance on psychiatric drugs. Others, many of them ex-patients, embrace a more elastic definition that would encompass people like Fred Frese and John Nash, who continue to have symptoms they have learned to manage.

"I'd say there's a gradation of severity of illness and a gradation of recovery," said Francine Cournos, a professor of psychiatry at Columbia University who directs a clinic in Manhattan for people with severe mental illness. "The number of people who wind up completely symptom-free and without relapse is probably small. But everyone we treat we can help."

A Bleak Prognosis

In 1972, Swiss psychiatrist Manfred Bleuler published a landmark study that appeared to refute the teachings of his eminent father, Eugen Bleuler, who in 1908 coined the term schizophrenia. The elder Bleuler, an influential colleague of Freud's, believed that schizophrenia had an inexorable downhill course, much like premature dementia.

His son, curious about the natural history of the disease, tracked down 208 patients who had been discharged from one hospital an average of 20 years earlier. Manfred Bleuler found that 20 percent were fully recovered, while another 30 percent were greatly improved. Within a few years research teams in other countries essentially replicated his findings.

In 1987 psychologist Courtenay M. Harding, then at the Yale University School of Medicine, published a series of rigorous studies involving 269 former residents of the back wards of Vermont's only state mental hospital, where they had spent years. Widely considered to have been the sickest patients in the hospital, they had participated in a 10-year model rehabilitation program that included housing in the community, training in jobs and social skills and individualized treatment.

Two decades after they completed the program, 97 percent of the patients were interviewed by researchers. Harding, a former psychiatric nurse who expected only modest improvement, said she was stunned to discover that about 62 percent were judged by researchers to be either fully recovered they took no medication and were indistinguishable from people who had no diagnosable mental illness or functioned well but had not recovered in one area. (They took medication or heard voices.) A study comparing the Vermont patients to a matched group in Maine, a state with much more parsimonious mental health services, found that 49 percent of the Maine patients had recovered or improved significantly.

So why has the almost universally gloomy prognosis for schizophrenia persisted in the face of convincing empirical evidence to the contrary?

"Psychiatry has always clung to a narrow medical model," observed Harding, who directs Boston University's Institute for the Study of Human Resilience. "Psychiatric dictionaries still do not have a definition of recovery," but speak instead of remission, which "carries the heavy time bomb of impending illness," she observed.

Columbia's Francine Cournos, an internist as well as a psychiatrist, agrees. "A lot of research is done in academic settings, and a lot of people who get seen there are sicker," she said. "And if you're working in a state hospital, all you ever see are the sickest patients."

Psychiatrists traditionally have not made a distinction between symptoms and the ability to function, Cournos added. "It's important to remember that there is a difference between the two. We've had patients here who are very high-functioning and psychotic, including a woman who ran a very high-powered executive program but at work wouldn't write anything down. She coped by memorizing everything she had to do because it drowned out the voices."