Saving Normal

Mental health and what is normal.

Two Flew Over the Cuckoo's Nest

A cautionary tale from Mindy Lewis and me

My first training in psychiatry began forty five years ago on an inpatient unit where we specialized in making patients sicker.

The head of the hospital was an influential psychiatrist who had created the then fashionable diagnosis-du-jour ('pseudoneurotic schizophrenia') and had somehow convinced many US clinicians (and us naïve residents) that schizophrenia could be diagnosed even in patients who showed no outward signs of psychosis- if only we were smart enough to probe beneath their surface seeming healthiness. It was a totally crazy idea, but I was too young and too stupid to see through it.

Being dead wrong and really dangerous didn't stop this bizarre diagnosis ( called 'pseudoneurotic schizophrenia') from becoming a blossoming fad that temporarily captured the imagination and changed the practice of many US psychiatrists. Fortunately, it never caught on in the rest of the world and died a sudden death forty years ago when a cross national study demonstrated conclusively that US psychiatrists were wildly over-diagnosing schizophrenia when it made no sense.

But we did a lot of damage in the meantime. Our training consisted in learning the oh-so-subtle signs of pseudo 'pseudoneurotic schizophrenia' so that we might misdiagnose teenagers and young adults who really had much less severe problems. And we kept them in hospital for a year or more, often treating them with antipsychotic medications that had all sorts of horrible side effects.

Mindy Lewis was a patient on that unit and I was a doctor (not hers, but I did the same foolish stuff with some other patients who were her close friends). Here is Mindy's short version of what happened. She has eloquently described her experience in much more detail in her book 'Life Inside' http://www.mindylewislifeinside.com and in my book 'Saving Normal'.

"In 1967, I was a shy, self-critical, rebellious 15-year-old who loved poetry and painting. My recently remarried mother had no idea how to handle me: I was skipping school, hanging out in Central Park and experimenting with drugs. Following the advice of a psychiatrist, my mother sent me to a well-regarded psychiatric hospital with a special ward for adolescents and young adults. There I would remain until I turned 18."

"Inside the hospital, every aspect of my behavior was observed and classified. Now, in addition to the angst I felt as a teenager without a solid sense of self, I was being viewed through the lens of mental illness. When I asked what was wrong with me, I was told that I was “adolescent schizophrenic,” the same as most of my friends on the ward. I was given meds that nailed me to the furniture and fused the minutes into endless days of boredom and inertia. I couldn’t go outside, breathe the air, wear my own clothes. If you weren’t depressed to begin with, being in the hospital would do it. Suicide attempts were common, and some of my friends succeeded."

"Who was I supposed to be—crazy or sane? When I was passive and compliant, I was rewarded, but when I exhibited a spark of life, I was punished for 'acting out'. Exhibiting symptoms was rewarded with extra attention. I became adept at playing the game of mental patient, but underneath, I longed for someone to tell me I was okay."

"Finally released at 18, I flushed away my meds and set out to find my way in the world I’d left almost three years before. Friends I’d grown up with had gone off to college, while I’d just barely survived the trauma of the hospital. I’d lost friends to drug overdoses and suicide. I was furious at my mother and distrusted authority. I felt ashamed of having been hospitalized for so long and could not shake the sense that something was wrong with me. Each perceived failure or flaw elicited deep anxiety. Even while working at becoming a visual artist and graphic designer, I felt that a meaningful career and a lasting relationship were possible for others, but not me."

"When I began writing my memoir, I acquired a copy of my hospital records. There I saw myself described as 'schizophrenic', 'autistic', 'psychotic', and 'hopeless'. Though horrified, I began to see that these labels had no relationship to who I was, but constituted a kind of guesswork. In writing my memoir I came to realize that everyone—my mother, the doctors—were trying to do the best they could at the time. Unfortunately, I’d gotten caught in the same kind of broad diagnostic net that ensnares so many parents and kids today. Only the labels are different."

Thanks Mindy for teaching us and for forgiving me. Mindy survived the unit, grew up, and became a successful graphic designer, author, and creative writing instructor. She does not have, and never did have, a single schizophrenic bone in her entire body.

At the time I loved my work on that terribly flawed unit and thought I was helping people and learning a lot. It was only later when I had gathered much greater experience in the wider world of psychiatry and life that I realized I was also hurting people and learning a lot of the wrong things.

Indirectly, Mindy's story explains why I have felt so alarmed by (and have been so loudly sounded the alarm about) DSM 5. I began criticizing DSM 5 four years ago when I discovered it would include a 'psychotic risk syndrome' suspiciously like 'pseudoneurotic schizophrenia'. I knew from painful personal experience (Mindy's mostly, but mine vicariously) the risks that 'psychosis risk' would lead to a similar inappropriate prescription of antipsychotic medications for people who didn't need them.

The antipschiatry movement is fueled by those who have suffered damage from ill conceived and poorly delivered treatment and are understandably angry and eager to protect others from a similar fate. But it goes too far in its blanket criticism and misses the value of psychiatry done well. Mindy has a broader understanding and a more helpful message.

I have known hundreds of patients who were not helped or were directly harmed by psychiatry. Thirty years ago, I wrote a paper called 'No Treatment As The Prescription Of Choice' as a way of warning clinicians and patients off treatments that might do more harm than good. But I have also known many thousands of patients who have benefited greatly. The overall results in psychiatry are quite good and compare favorably to other medical specialties.

It makes as little sense to defend psychiatry done badly, as with Mindy, as to attack it when done well. In our different ways, Mindy and I have both flown over the cuckoos nest- and I don't want other people to be trapped in it. But I also don't want people to miss out on treatment when it is appropriate and necessary.

 

Allen Frances, M.D., was chair of the DSM-IV Task Force and is currently professor emeritus at Duke.

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