But all those tests came back negative.
About a year in—by which point I’d developed subtle jaw and hand tremors—one doctor, a neurologist who wore green cowboy boots and spoke with a thick Italian accent, believed he’d figured out my condition. The first time I met him, he walked into the room, logged on to the hospital network’s computer, noted the long list of specialists I’d seen (“Well, you’ve certainly seen everyone in town, haven’t you?” he said flippantly, as if I’d been sleeping around), and—skipping the exam—immediately had the diagnosis. He thought I was a modern-day version of Freud’s female hysteric, experiencing what’s known as conversion disorder.
This is a condition in which a person’s anxiety is “converted” into neurologic conditions such as paralysis, balance issues, incontinence, blindness, deafness, tremors, or seizures. The symptoms are often temporary and tend to be related (sometimes symbolically) to the psychological stressor at its root. For instance, after seeing something traumatic (like one’s spouse in bed with another person or a grisly murder), a patient might experience blindness. After a terrifying fall, a patient might experience leg paralysis even though there was no functional evidence of nerve damage. Or a man who feels that his anger toward his wife is unacceptable might experience numbness in the arm he fantasized about raising to hit her.
People with conversion disorder aren’t faking it—that’s called factitious disorder. People with factitious disorder have a need to be thought of as sick and intentionally go to great lengths to appear ill. In conversion disorder, though, the patient is actually experiencing these symptoms; it’s just that there’s no identifiable medical explanation for them. They seem to be caused by emotional distress that the patient is completely unconscious of.
I didn’t think I had conversion disorder. But then again, if conversion disorder was caused by an unconscious process, how could I know?
Conversion disorders have a long history and have been documented as far back as four thousand years ago in ancient Egypt. Like most emotional conditions, they were disproportionately diagnosed in women. In fact, symptoms were thought to be caused by a woman’s uterus moving either up or down, a syndrome that came to be known as a “wandering uterus.”
The treatment? A woman was to place pleasing aromas or spices near her body in the opposite direction of where the uterus had supposedly wandered. This “cure” was thought to lure the uterus back to its proper location.
In the fifth century BC, however, Hippocrates noted that aromas didn’t seem to be working for this malady, which he had named hysteria, from the Greek word for “uterus.” Accordingly, the treatment for hysterical women went from aromas and spices to exercise, massages, and hot baths. That lasted until the beginning of the thirteenth century, at which point there was thought to be a connection between women and the devil.
The new treatment? Exorcism.
Finally, in the late 1600s, hysteria came to be thought of as related to the brain rather than the devil or the uterus. Today, there’s still debate on how to think about symptoms for which we can’t find a functional explanation. The current ICD-10 lists “conversion disorder with motor symptom or deficit” as a dissociative disorder (and includes the word hysterical in its subtypes), whereas the DSM-5 classifies conversion disorder as a “somatic symptom disorder.”
Interestingly, conversion disorders tend to be more prevalent in cultures with strict rules and few opportunities for emotional expression. Overall, though, their diagnosis has gone down in the past fifty years, for two possible reasons. First, doctors no longer misdiagnose the symptoms of syphilis as a conversion disorder; second, the “hysterical” women who succumbed to conversion disorder in the past tended to be reacting to restrictive gender roles that look very different from the freedoms more women are experiencing now.
Nonetheless, the neurologist in cowboy boots scanned the list of specialists I’d seen, looked up at me, and smiled the way people smile at naive children or delusional adults.
“You worry too much,” he said in his Italian accent. Then he asserted that I must be stressed out—being a working single mom and all—and that what I needed was a massage and a good night’s sleep. After diagnosing me with conversion disorder (his word: anxiety), he prescribed melatonin and told me to make a weekly spa appointment. He said that though I looked “like a Parkinson’s patient,” with the big bags under my eyes and the tremors, I didn’t have Parkinson’s; I had sleep deprivation, which could cause those same symptoms. When I explained that the fatigue was making me sleep too much, not too little (leaving Boyfriend to wake up with my son and look at those Legos), Dr. Cowboy Boots grinned. “Ah, but you’re not getting good sleep.”
My internist was certain that I didn’t have a conversion disorder, not only because my symptoms were chronic and getting progressively worse, but also because each specialist I saw discovered something wrong (a hyperinflated lung, a grossly elevated level of something in my blood, a swollen tonsil, those deposits scattered throughout my eyes, “extra space” in my brain scan, and, again, those angry skin rashes). They just didn’t know how to put the data together. It was possible, some specialists said, that my symptoms were related to my DNA, a glitch in one of my genes. They wanted to sequence my genes to see what they might find, but the insurance wouldn’t cover the gene sequencing—even after the doctors appealed several times—because, the insurance company reasoned, if I did have a yet-to-be-discovered genetic disorder, there would be no known treatment.
I’d still be sick.
If it sounds strange that I presented myself as relatively fine to the outside world—I shared little of the Medical Mystery Tour with anyone, even Boyfriend—I had my reasons. First, if I were to tell people what was going on, I wouldn’t know how to explain it. It wasn’t as though I could say, “I have [X] illness.” Even people with depression, a malady that has a name, often have trouble explaining it to others because its symptoms seem vague and intangible to anyone who hasn’t experienced them. You’re sad? Cheer up!
My symptoms were as nebulous as emotional suffering appeared to outsiders. I imagined people listening to me and wondering how I could have gotten so sick and still not have any answers. How could so many doctors be flummoxed?
In other words, I knew I was at risk of being told it was all in my head, even before the cowboy-boot-wearing neurologist did exactly that. In fact, after my appointment with him, anxiety was added to my electronic medical chart, a word that every subsequent doctor would see on the home page of my file. And while technically this was true—I certainly was anxious about my miserable happiness book and my poor health (it wouldn’t be until later that I’d be anxious about my breakup)—I felt as though there was no way to escape that label as the cause of my symptoms, no way to be believed.
I kept it to myself because I wanted to avoid being a woman suspected of having a wandering uterus.
And then there was this: On one of our early dates, when Boyfriend and I were in the midst of infatuation and had hours-long conversations about anything and everything, he mentioned that before meeting me, he’d gone on a few dates with a woman he really liked but when he’d learned that she had some difficulty with her joints that made it hard for her to go hiking, he’d stopped seeing her. I asked him why. After all, she didn’t have an acute illness; it sounded more like a common case of arthritis, and we were middle-aged, after all. Besides, Boyfriend wasn’t even a hiker.