September 11, 2014

WHAT’S UP, DOC?: Mistaken for Crazy

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By SHOAN YIN CHEUNG ’09

“Hysteric” is usually not what comes to mind when speaking of Leon Fleisher, the American pianist and conductor.

In 1964, Fleisher lost the use of his right hand due to a condition that was later identified in the early 1990s as focal dystonia. Yet, had this occurred even a half century earlier, he could have been labeled a hysteric.

Dystonia, which now refers to a class of neurological movement disorders that cause involuntary muscle contractions, had long evaded medical classification as an illness that skates the blurry line between disorders of organic and psychogenic origins.

Dystonia first appeared in medical literature in 1911. At the time, the dominance of psychoanalytic theory in explaining psychiatric disorders, along with the lack of a known biological mechanism for dystonia, meant that many patients with dystonia were treated with psychotherapy. Since the 1950s however, advances in genetics and brain-imaging technology contributed to articulating an explanation for dystonia in biological terms. Dystonia is now a bona fide neurological disorder, and the standard treatment entails oral medications and/or BotoxTM, a muscle relaxant that ameliorates the effects of the muscles spasms.

Western biomedicine has long been insistent on maintaining a schism that separates soma from psyche. It legitimizes ailments that arise from the former and dismisses those that have no known pathological origin. In the case of dystonia, it appears that advances in medical technologies have enabled the condition to conform to biomedical expectations of disease, and our current conception of dystonia as explained by neurology comes with a treatment plan that produces quantifiable results to boot. It may seem that biomedicine has nailed this elusive disorder — at least, until the BotoxTM wears off and has to be injected again.

Where the biomechanical explanation breaks down, however, is precisely where we call biomedicine to question: How exactly does the medical establishment pin down the phenomenon of illness, and what are the repercussions of investing “the real” in the biological?

Medicine, which has trouble grappling with the unknown to the point that diseases that have no known etiological pathway are called “idiopathic,” has defined psycho-genetic diseases as those that look very similar to illnesses caused by damage to the nerves, brain or muscles, but have no traceable physical causes. Nowadays, such slippery diseases are thought to have both organic and psychogenic factors. Throughout the 18th and especially the 19th centuries, however, the available category for understanding nervous diseases that had no pathological origin was neurosis, and hysteria was a subcategory.

We perhaps know of hysteria now as the antiquated female malady of sexual dysfunction and uncontrollable emotions popularized by Victorian fiction. For nearly 2,000 years, hysteria had occupied the Western imagination as a medical condition characterized by disturbances in the uterus (hysteria comes from the Greek word for uterus). Starting in the mid 19th century, a growing body of medical professionals began treating hysteria as a disease. As the body came to be thought of as a bounded biological unit that operated according to universal scientific law, the emerging specialties of neurology, psychiatry and gynecology all sought after biological explanations for hysteria.

Hysteria’s most famous advocate was Jean-Martin Charcot (1825-1893), the father of French neurology and Sigmund Freud’s mentor. He worked at the Salpêtrière Hospital in Paris, historically known as the prison for prostitutes and a holding cell for the mentally disabled, criminally insane and the poor. While he initially thought of hysteria as a neurological disorder with hereditary characteristics, at the end of his life he believed it to be a psychological disease.

Neurosis and hysteria are no longer listed in the Diagnostic and Statistical Manual of Mental Disorders, but psychogenic diseases such as dystonia were formerly known as part of the “hysterical” diseases.

We no longer call people who suffer from psychogenic diseases hysterics, yet we can’t attribute this to a blind faith that we have eliminated quackery from modern day medicine. As we have seen, doctors genuinely believed that hysteria had an etiology. Hysteria is now generally rejected as a diagnostic category and has since been parsed into more clinical sounding psychiatric disorders, appearing in the DSM as dissociative fugue disorder, conversion disorder, or body dysmorphic disorder, among others.

In the last half of the 20th century, focal dystonia has gained a high profile through its association with musicians, writers and other creative professions that have in common the performance of repetitive movements. It has benefited from its legitimization as a biomedical phenomenon.  Now a neurological disorder and not a form of hysteria, dystonia can be traceable to genes and synaptic connections in the brain. Dystonia has gained a place in biomedical literature by acquiring an organic, if imperfect, pathology. Yet, the search for somatic explanations of illness means that the mind becomes shorthand for “we don’t know,” or worst, not legitimate.

Last week, when I brought up hysteria in a class on medical sociology, my students were surprised to learn that it was once a medical category. They told me that they only knew of hysteria in the context of mass psychosis, from the term “mass hysteria.”

If you do a quick search for the “mass hysteria” on Google, you can find stories of mysterious collapses by young women in garment factories in Southeast Asia, or other strange behaviors that occur en masse. What these incidents have in common is that they happen among vulnerable populations in conditions of distress.

It has been said that the onset of focal dystonia — which is also characterized by involuntary and unexplainable actions — may be triggered by stress. Yet we don’t label the musician as the hysteric. We instead reserve that label for explaining the behavior of less illustrious sufferers, like the poorly paid female workers laboring in factories that feed the global supply chain. Not all mysterious illnesses deserve a biological explanation, it seems.

Shoan Yin Cheung graduated from the College of Arts and Sciences in 2009, and is now a graduate student studying medical anthropology in the Department of Science and Technology Studies. She may be reached at sc479@cornell.edu.  What’s Up, Doc?  appears on alternate Fridays this semester.