Skepticism Greets Report Of Schizophrenia Recovery

The unblighted landscape of lucidity and mental health and the delusional regions of schizophrenia are believed to be separated by a chasm no one traverses.

Yet Frederick Frese, Ph.D., has by his own account crossed the terrain more than once, as if the two places were a contiguous territory with an uncertain boundary.

A psychology faculty member in the departments of psychiatry at two medical schools, a frequent speaker, a former board member and vice president of the National Alliance for the Mentally Ill, and a longtime clinician at a major psychiatric hospital, Frese would seem to have covered, and recovered, much ground since the days when he was first diagnosed with paranoid schizophrenia in 1966.

But whether Frese has “recovered” from schizophrenia—or, to put the matter another way, if what he has recovered from was schizophrenia or something else—is a matter of debate for some.

Not for Frese. He recounts with candor his years in and out of state, county, military, VA, and private hospitals and—with a degree of humor—his time as a serviceman at a Marine Corps barracks when he became convinced that he had discovered a plot by the enemy to hypnotize high-ranking military officials. Or the day he was carried off in an ambulance from a cathedral following a breakdown when he believed he had “cracked the code of the universe,” uniting the wisdom of the East and the West.

“I have been diagnosed and treated for schizophrenia for 35 years,” he told Psychiatric News. “In light of my history, it is difficult for me to understand how one can argue that I have been misdiagnosed. But the mental health professions have been wedded to the belief that you can’t possibly recover, and I have been told—somewhat tautologically—that if I have recovered, I must have had something else.”

Throughout those 35 years, Frese has been treated with drugs, gotten better, and relapsed from time to time. To this day, he said, he continues to experience symptoms. Yet he has also compiled a record of professional and personal achievement that many would envy.

So it would seem that “recovery” from schizophrenia—or from many mental illnesses—is a tricky concept. “It is not accurate to characterize anyone who is subject to symptoms as fully recovered,” Frese said. “I don’t characterize myself as recovered, but recovering.”

Neurodegenerative Disease?

The prospect of recovery does, in fact, fly in the face of orthodox psychiatric belief, which has held to the definition of schizophrenia—put forward more than a century ago by the German neurologist Emil Kraepelin—as a chronic, neurodegenerative brain disease.

But some researchers today cite a body of 10 longitudinal studies of two-to-three decades in length showing that many people with schizophrenia do in fact recover to some degree and that some go on to live lives that may be indistinguishable from the healthy.

In 1987 Courtenay Harding, Ph.D., published findings from a 32-year longitudinal study of 269 back-ward patients from Vermont State Hospital. This intact cohort participated in a comprehensive rehabilitation program and was released to the community in a planned deinstitutionalization effort during the mid-1950s. At their 10-year follow-up mark, 70 percent of these patients remained out of the hospital, though social isolation and recidivism were common.

Twenty to 25 years after their index release, 262 of these subjects were blindly assessed and rediagnosed using modern criteria with structured and reliable protocols. One-half to two-thirds of them had achieved considerable improvement or recovery, corroborating findings from Europe and elsewhere.

But Harding said that her findings, and the notion that people with schizophrenia recover, is greeted generally with skepticism. “People look at me like I am from another planet,” she told Psychiatric News.

Harding is director of the Institute for the Study of Human Resilience and senior director of the Center for Psychiatric Rehabilitation at Boston University.

She added that the skepticism is not difficult to understand given that few studies on the course of schizophrenia have taken a longitudinal approach. “What happens in most research strategies is that the investigators follow a cohort of convenience for a short time while they are still in treatment,” Harding said.

Consequently, the literature tends to corroborate what psychiatrists see on a day-to-day basis: chronic disease and recidivism. But Harding said that impression is a classic example of the “clinician’s illusion”—a misapprehension about the nature of disease, common to any number of chronic conditions, that is an artifact of a physician’s practice: The physician tends to see only those patients who are sickest and who do not respond to treatment, while those who are less infirm and respond are—naturally enough—seen less frequently or not at all. In time, the physician cannot help but form an impression of nearly incurable chronicity.

“Any clinician worth his salt will tell you it happens,” Harding said. “You get inured to what the range is because you keep seeing these [chronic] people right in front of your nose.”

And the short-term clinical reality of schizophrenia is frequently dismal. “The day-to-day experience is heavily crowded caseloads and shelters where it doesn’t look like anyone is getting better,” she said. “The expectation is that you do stabilization and maintenance with medication and entitlements, and that’s the best you can do.”

Yet Harding said that outside the range of the “clinician’s illusion” are uncounted patients who have passed through and out of systems of care, gotten married, and are holding jobs. “Most of them are not even known in the community as having mental illness,” she said. “They have gone about their lives and are embedded in society.”

Influenced by Kraepelin

The concept of schizophrenia as a disease from which no one recovers is itself embedded in history. Robert Spitzer, M.D., who was editor of DSM-III, said that the criteria for schizophrenia in that edition—and succeeding editions—were heavily influenced by researchers who took as their guide the definition proposed by Kraepelin.

Moreover, Spitzer said that Harding’s statistics about recovery “seem very dubious” to many clinicians—though he acknowledges that the “clinician’s illusion” is a phenomenon to be reckoned with.

While claiming to hold no doctrinaire position himself, he added, “As a clinician, if I saw someone who had schizophrenia and who had fully recovered, I would personally be very puzzled.”

Harding believes that schizophrenia is not one disease, but comprises a “group of schizophrenias,” and that heterogeneity of outcome is the true hallmark of the disorder. She said that research has shown a range of prognoses, with affective disorders having the best, followed by schizoaffective disorders, paranoid schizophrenia, and then those with disorganized thinking.

“The course of schizophrenia is a much more complex and heterogeneous process than has been appreciated,” she said. “The narrow medical model targets pathology, whereas a recovery model targets strengths of the individual, the family, the clinician, the social network, and systems of care upon which to build the rehabilitation process.”

Long-Lasting Implications

William Carpenter, M.D., director of the Maryland Psychiatric Research Center (MPRC), agrees that schizophrenia is much more likely a cluster of syndromes than a single disease. “There may be forms of the illness that meet current criteria from which recovery does take place,” he told Psychiatric News.

But Carpenter holds a somewhat more circumspect view of the prospects for recovery. “In the main, the people who meet the criteria are likely to have long-lasting adverse implications,” he said. “The question of recovery then becomes entirely a matter of how you define recovery. If you define it as living and functioning as if one never had the disease, that rarely happens. If you define it as being clinically stable and making a good adaptation, that probably happens with some frequency, but it would still be a minority of patients.”

He added, “You can have a favorable course without it being as though you never had the disease.”

Further, the measures of “recovery” are likewise relative: a patient may be working full time but in a very diminished capacity compared with what he or she might have been capable of without the disease.

Carpenter said he was at one time distrustful of his own possibly illusory understanding of schizophrenia, derived from the patients he saw at the MPRC—they are largely very sick and have not responded to treatment. “For a long time I thought our view of the disease was heavily tainted by Kraepelin, and that we needed a more epidemiologically based understanding,” he said.

In the late 1980s he participated in a study of “first episode” schizophrenia in the Suffolk County area of Long Island, N.Y. The study, published in the January 1998 American Journal of Psychiatry, looked at the course of disease in a community sample of young patients who were being treated very early.

“Arguably, we would be seeing a population that was much more representative of the illness,” Carpenter recalled.

The preliminary results were sobering. “The impression was that every story is a sad story,” he said. “It reawakened in me the view that even if you start with a representative community sample of people getting their first diagnosis, the illness takes a really bad toll on almost all the people almost all the time.”

Carpenter agreed, however, that the orthodox view of schizophrenia as a disease that always has an inexorably downward course is simply wrong. Moreover, even in the case of the sickest patients there appears to be some natural improvement with aging. “Clinicians should assume that most patients have a chance for substantial stability and have a chance to regain much of their lost niche in society,” Carpenter said. “Individuals will vary in how far they can go in accomplishing that.”

Recovery in any one patient would seem also to hinge on the largely unquantifiable variable of human individuality and resilience.

Frederick Frese joined Carpenter and Harding in urging clinicians to shed illusions of a hopeless prognosis and to partner with the recovery movement and “live with ambiguity.” The latter may be another way of phrasing Harding’s advice to “seek out the person behind the disease”—a person who may just possibly defy the odds.

“Increasingly, patients and clinicians need to work together,” Frese said. “The voice of those of us in recovery should be given maximal dignity and respect. That will be to the clinician’s advantage.” ▪