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.
I spent four years after my diagnosis collecting facts about my disease, about ages of onset, and about new advances in infusion treatments—a kind of armor to defend against the lonely irrationality of it all. I am proof of our advancement. Still, I am stalked by the everpresent threat that psychosis will return. Writing this now, halfway through my pregnancy with twins, I can’t forget the ways my body can (and has) failed me. As traumatic as being diagnosed with melanoma was in my late teens, it did not feel like the disease touched a part of my soul the same way that my experience with psychosis did. Psychosis is the scariest thing that has ever happened to me. It was neurological, “organic,” but it came from me, from inside who I am, making it far scarier than any other “physical” illness. It rocked my sense of self, my way of seeing the world, my comfort in my own skin, and shook the foundations of who I am. No amount of fact-gathering could arm me against this truth: We are all hanging on by a very thin thread, and some of us won’t survive our fall.
I published Brain on Fire to help raise awareness of my condition and in the aftermath was invited to lecture widely at medical schools and neurological conferences, spreading the word about my disease like a missionary, determined to make sure no others were left undiagnosed. At one point, I had the chance to address a large crowd of psychiatrists inside a functioning psychiatric hospital. It was located in a renovated army barracks, but it felt light, white, and modern. Like a real hospital, I remember thinking. (When I had packed for the trip I made sure to bring my most adult, sophisticated, not crazy ensemble, a simple black-and-turquoise Ann Taylor shift dress paired with a crisp black blazer.)
After my presentation that day, a psychiatrist introduced himself to our group of presenters, speaking in soft but urgent tones about one of his patients. He had diagnosed a young woman with schizophrenia, but in his words, “It just didn’t feel right.” In fact, she reminded him of me. The woman was of a similar age, had a similar diagnosis, and exhibited similar symptoms. But she also appeared similar to the sea of others with serious mental illness who were being treated alongside her. The question was, How do we know the difference? How to decide who will respond to the intervention I received—the infusions that helped stop my body from fighting itself—versus psychiatric treatments? The group of doctors discussed next steps, the blood tests, lumbar punctures, and MRI scans that might offer an alternative diagnosis for this young woman. Later, as we walked through one of the hospital’s units, passing a group therapy meeting, I couldn’t help wondering, Is she in there?
I learned after my talk that the young woman had indeed tested positive for autoimmune encephalitis, the same disease I’d had. But because she had remained misdiagnosed for two years, unlike the single month I had spent in the hospital, she would probably never regain the cognitive abilities that she had lost. She could no longer care for herself in even the most basic ways and despite her successful diagnosis, she now would, one doctor told me, operate as a permanent child.
I had thought I was done examining my own story after I published my memoir. But once you’ve come face-to-face with real madness and returned, once you’ve found yourself to be a bridge between the two worlds, you can never turn your back again. I couldn’t shake the thought of the words TRANSFER TO PSYCH in my own medical records. What happened to this young woman almost happened to me. It was like seeing my reflection through the looking glass. She was my could-have-been, my mirror image.
How are we—my mirror images and I—any different from the millions of people with serious mental illness? How could we be so easily misdiagnosed? What does mental illness mean, anyway, and why would one affliction be more “real” than another? These questions have haunted me ever since my memoir was released, when the stories of people’s battles within the medical system first landed in my inbox. Some write hoping to have my disease. Anything, some say, except mental illness.
One email I received was from the father of a thirty-six-year-old man who had struggled for two decades with debilitating psychosis. He told me how little modern medicine had been able to offer. “They seem to blame my son for his ‘psychiatric illness’ on the basis that he has no ‘physical illness’ that they can heal,” he wrote. The drugs, the only treatment offered, had not helped, but actually made him worse. Despite his family’s pleas for other options, the response was, “Take the drugs—or we’ll force him to take them.”
The father recognized his family’s plight in my own story and had been inspired by my parents’ successful pushback against the medical system. My recovery bolstered his determination to continue searching for more meaningful answers for his son. But something I’d said subsequently had troubled him. In his email he included a YouTube link to an event where I’d spoken at the release of the memoir’s paperback edition. As I watched the clip, I felt like I was being slapped in the face by my own palm. He quoted my words back to me: “My illness appeared as if it was a psychiatric condition, but it was not a psychiatric condition—it was a physical condition.”
This father felt betrayed hearing me utter the same unfair distinction that he so
often heard from his son’s doctors. “The brain is a physical organ and physical disease occurs within the brain. Why does that make it a ‘psychiatric condition’ instead of a physical ‘disease’?” he wrote. “What am I missing?”
He was right, of course. How had I so wholeheartedly embraced the same unproven dichotomy that could have confined me to a psychiatric ward, or even killed me? Was it my need to believe that, because I had a physical disorder, I had been “cured” in a way that set me apart from people with psychiatric conditions? What else had I—had we—accepted as fact that may have been dangerously reductive? How many fallacies about the mind and brain have we all just been taking for granted? Where did the divide lie between brain illness and mental illness, and why do we try to differentiate between them at all? Have we been looking at mental illness all wrong?
To answer this, I had to heed the advice that my favorite doctor, my own Dr. House, neurologist Dr. Souhel Najjar, often gives his residents: “You have to look backward to see the future.”
2
NELLIE BLY
New York, 1887
The young woman fixed her focus on the face, barely registering the wide, mournful eyes that stared back at her in the mirror. She smiled. She raged. She grimaced. She read aloud ghost stories until she spooked herself so thoroughly that she had to turn up the gaslight before she could return to the mirror. She practiced these hideous gazes until dawn, when she cleaned herself, put on an old, moth-eaten dress, and tried to tamp down the growing uncertainty about what lay ahead. There was a chance she would never come home, or that even if she did, this assignment could change her forever. “The strain of playing crazy,” she wrote, “might turn my own brain, and I would never get back.”
Despite her intense hunger, she skipped breakfast and headed to the Temporary Home for Females on Second Avenue. This morning she called herself Nellie Brown, though she had been born Elizabeth Jane Cochran, and as a professional journalist went by Nellie Bly. Her assignment, given to her by her editor at Joseph Pulitzer’s New York World, was to infiltrate the notorious Women’s Lunatic Asylum on Blackwell Island as a mental patient to write a “plain and unvarnished” first-person narrative about the conditions there. In order to get inside the Blackwell Island asylum, after all, she would need to “prove” that she was indeed insane. This was why she had forced herself to stay up all night, hoping that the physical strain of the sleep deprivation, combined with her disheveled appearance and wild eyes, might induce the house’s matron to call the authorities to whisk Nellie off to an asylum, setting the whole plan in motion.
When the US government started tracking the incidence of mental illness, it broke it down into two broad categories of “idiocy” and “insanity.” By 1880, the census had expanded to include seven categories of mental disease (mania, melancholia, monomania, paresis, dementia, epilepsy, and dipsomania), but in the first half of the nineteenth century most doctors believed that craziness was one-size-fits-all, something called unitary psychosis. If you acted crazy, you were crazy.
Almost anything could make you a ward of the state. “Compulsive epilepsy, metabolic disorders, syphilis, personality due to epidemic encephalitis, moral adverse conditions such as: loss of friends, business troubles, mental strain, religious excitement, sunstroke, and overheat,” read one intake log from California’s Patton State Hospital archive. One reason for commitment at Patton State in the nineteenth century was excessive masturbation. Another was for being “kicked in the head by a mule.” Other hospital records show that some poor souls were committed for “habitual consumption of peppermint candy” or “excessive use of tobacco.” Unmoored after a child died? You could be institutionalized. Use a foul word or two? In a cell you go. Miss a menstrual cycle and you could be committed. These kinds of convenient diagnoses, the sort given to citizens who don’t conform, have littered the annals of psychiatry. Hysteria was lobbed at women who dared defy social mores. In England, militant suffragettes, in particular, were diagnosed with “insurgent hysteria.” A nineteenth-century Louisiana physician outlined two “conditions” unique to the slaves he studied: dysaesthesia aethiopica, or pathological laziness; and drapetomania, the (evidently inexplicable) desire to escape bondage. Treatments for both included whippings. These were not, in any medical or scientific sense, real illnesses or disorders—they were pseudoscience, purely societal strictures posing as medicine.
Throw a rock into a crowd in the late 1800s, and there’s a good chance you’d hit someone who had spent some time in an asylum. And, for those who did end up committed, odds weren’t great that they would make it out intact. Once declared insane, you could permanently lose custody of your children, property, and rights to inheritance. Many would remain locked away for a long time, if not the rest of their lives. Those who pushed back often were beaten or “treated” with bleeding, leeching, enemas, and induced bouts of intense vomiting (which were key parts of general medicine’s arsenal of care at the time). A substantial portion of people admitted to psychiatric hospitals in this period died within months, even weeks, of being admitted—though there is no definitive proof whether this is because they really suffered from misdiagnosed life-threatening medical conditions or whether the hospitals’ conditions themselves led to an early end, or if it was a combination of the two.
The malleability of the era’s definitions of insanity meant that any man of a certain means and pedigree could just pay off a doctor or two and dispatch whomever he wanted gone, a disobedient wife, for example, or an inconvenient relative. This understandably bred a widespread anxiety over false diagnoses. Newspapers stoked this fear by publishing a litany of articles about people sidelined into mental hospitals who weren’t truly sick.
There was Lady Rosina, an outspoken British writer whose feminist views estranged her from her famous husband, writer Sir Edward Bulwer-Lytton (creator of the most clichéd opening line of all time: “It was a dark and stormy night”). Sir Bulwer-Lytton didn’t have time for such a mouthy wife, especially with his seat in Parliament in jeopardy, so he tried to lock her up to shut her up. Thanks to her own celebrity and the pressure that the press put on her husband, she emerged three weeks later and wrote about her experience in 1880’s A Blighted Life. “Never was a more criminal or despotic Law passed than that which now enables a Husband to lock up his Wife in a Madhouse on the certificate of two medical men, who often in haste, frequently for a bribe, certify to madness where none exists.”
Elizabeth Packard continued Lady Rosina’s fight in America. Packard butted heads with her Presbyterian minister husband, Theophilus, about her interest in spiritualism. Her religious interests made Packard a direct threat to her husband’s stature in the community, so to save his own reputation he recruited a doctor to denounce her as “slightly insane” and commit her to Jacksonville Insane Asylum, where she lived for three years. When Packard was released into her husband’s care, she managed to escape the room he had locked her in by dropping a note out of the window. This note reached her friend, who arranged for a group of men to request a writ of habeas corpus on her behalf, giving Packard the opportunity to defend her sanity in court. A jury deliberated for only seven minutes before concluding that, despite what her husband and doctors said, Packard was sane. She published the book The Prisoners’ Hidden Life, which also featured the experiences of other women unloaded into hospitals by their loved ones. Thanks to her work, the state of Illinois passed a “Bill for the Protection of Personal Liberty,” which guaranteed that all who were accused of insanity would be able to defend themselves in front of a jury—since doctors, it was recognized, could be bought and sold. (There were negatives to Packard’s reforms, as jurors could be grossly ignorant about matters related to mental illness.)
After Bly successfully made enough of a scene at the boardinghouse for the police to be summoned, she was escorted to Manhattan’s Essex Market Police Court, where she faced the judge who would decide whether or not she should be locked up. Lucky for her, or rathe
r for the New York World, the judge accepted the events of the morning at face value.
“Poor child,” mused Judge Duffy, “she is well dressed, and a lady… I would stake everything on her being a good girl.” Though she’d worn her most ragged clothes and acted as insane as she could, her genteel looks and manners made it hard for him to take the next step. The judge understood that Blackwell Island was far from a place of refuge, and he hesitated to send someone he felt was too well bred to suffer the indignities there. “I don’t know what to do with the poor child,” the judge said. “She must be taken care of.”
“Send her to the Island,” suggested one of the officers.
The judge called in an “insanity expert,” a colloquial term from the era to describe the doctors who chose to work with the insane. These specialists, also called alienists and medical psychologists, or mocked as “bughouse doctors,” “quacks,” or “mad doctors,” mainly spent their careers confined, like their charges, to asylums. (Psychiatrist would become the preferred term in the early twentieth century.)
The insanity expert asked Bly to say “ah” so he could see her tongue. He shined a light into her eyes, felt her pulse, and listened to the beating of her heart. Bly held her breath. “I had not the least idea of how the heart of an insane person beat,” she later wrote. Apparently her vital signs spoke for her: On whatever quantitative grounds he found to set her apart from the sane, the expert took her to the insane ward at Bellevue. There she was examined by a second doctor who deemed her “positively demented” and shipped her off to Blackwell Island.
The Great Pretender Page 2