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The Undercover Mission That Changed Our Understanding of Madness
by Susannah Cahalan
Psychiatry is not the lone discipline to wander in such diagnostic haziness. The odds are high that in your lifetime, you will one day suffer from a disease whose causes and treatments are still unknown, or you will face a meaningful medical error that could delay proper treatment, hurt you, or contribute to the cause of your death. The list of illnesses without known cause and cure is long—from Alzheimer's disease to cardiac syndrome X to sudden infant death syndrome. It has been estimated that a third of people who see their general practitioners will suffer from symptoms that have no known cause or are deemed "medically unexplained." We don't really know how everyday drugs like Tylenol work, nor do we really know what exactly happens in the brain during anesthesia, even though 250 million people go under every year.
Look at the role that greed, arrogance, and profit- motivated overprescription played in driving the opiate epidemic—it was common practice to prescribe highly addictive medications for pain until we realized the untold damage and death the drugs caused. Accepted dogma often goes through reappraisals.
Medicine, whether we like to admit it or not, frequently operates more on faith than certainty. We can, in some special cases, prevent diseases with vaccines (smallpox, polio, measles, for example), or with healthy living measures (by purifying our drinking water or quitting smoking) and preemptive scans (as is the case with prostate, breast, and skin cancers), but for the most part we are limited in our ability to actually cure.
Despite the shared uncertainties, psychiatry is different from other medicine in crucial aspects: No other discipline can force treatment, nor hold people against their will. No other field contends so regularly with a condition like anosognosia, whereby someone who is sick does not know it, requiring physicians to make difficult decisions about how and when to intervene. Psychiatry makes judgments about people—about our personalities, our beliefs, our morality. It is a mirror held up to the society in which it is practiced. One label applied on your medical record by one doctor could easily send you tumbling off into a whole different hospital with your psychiatric records segregated from the rest of your medical records.
Here was where my story diverged from those of so many other patients. Thanks to many lucky factors that helped set me apart—my age, race, location, socioeconomic situation, generous insurance coverage—doctors pushed for more tests, which led to a spinal tap that revealed the presence of brain- targeting autoantibodies. The doctors were confronted with tangible evidence that disproved their psychiatric diagnosis. My illness was now comfortably neurological. I had spinal fluid tests, antibody workups, and academic studies to back me up. Doctors could provide a one- sentence explanation for what happened: My body attacked my brain. And there were solutions that could lead to improvement—even a cure. Hope, clarity, and optimism replaced the vague and distant treatment. No one blamed me or questioned if each symptom was real. They didn't ask about alcohol consumption or stress levels or family relationships. People no longer implied that the trouble was all in my head.
Mine became a triumphant story of medical progress, thanks to cutting- edge neuroscience. This girl was crazy; now she is cured. Medicine stands on a pedestal of stories like these—the father with stage four lung cancer who goes into full remission after targeted therapy; the infant who receives cochlear implants and will never have to know a world without sound; the boy with a rare skin disease who is saved by new skin grown from stem cells. Stories like these lend credence to the belief that medicine follows a linear path of progress, that we are only moving forward—unlocking mysteries of the body and learning more about the final frontiers of our minds on our way to cures for everyone.
Excerpted from The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness. Copyright © 2019 by Susannah Cahalan, LLC. Reprinted with permission of Grand Central Publishing. All rights reserved.
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