I walk Michelle out, ashamed about getting flustered and distracted, of not gathering the history and having to report to my supervisor empty-handed. All through graduate school, we students had been awaiting the Big Day when we would lose our therapeutic virginity, and now, I think, mine turned out to be more disgrace than thrill.
Then, relief: Discussing the session that afternoon with my supervisor, she says that, despite my clumsiness, I did just fine. I’d sat with Michelle in her suffering, which for many people can be an unusual and powerful experience. Next time I won’t worry so much that I have to do something to stop it. I’d been there to listen when she needed to unload the burdensome secret of her depression. In the parlance of therapeutic theory, I’d “met the patient where she was”—history-taking be damned.
Years later, when I’ve done thousands of first sessions, and information-gathering has become second nature, I’ll use a different barometer to judge how it went: Did the patient feel understood? It always amazes me that someone can walk into a room as a stranger and then, after fifty minutes, leave feeling understood, but it happens nearly every time. When it doesn’t, the patient doesn’t return. And because Michelle did, something had gone right.
As for the clock snafu, though, my supervisor doesn’t mince words: “Don’t bullshit your patients.”
She lets that sink in, then goes on to explain that if I don’t know something, I should simply say, “I don’t know.” If I’m confused about the time, I should tell Michelle that I need to step out of the room for a second to bring in a working clock so that I’m not distracted. If I’m to learn anything in this traineeship, my supervisor emphasizes, it’s that I can’t help anybody unless I’m authentic in that room. I had cared about Michelle’s well-being, I’d wanted to help, I’d done my best to listen—all key ingredients for starting the relationship.
I thank her and start toward the door.
“But,” my supervisor adds, “be sure to get that history in the next couple of weeks.”
Over the next few sessions, I get what I need for the clinic’s intake form, but it’s clear to me that’s all it is—a form. It takes a while to hear a person’s story and for that person to tell it, and like most stories—including mine—it bounces all over the place before you know what the plot really is.
Part Three
What makes night within us may leave stars.
—Victor Hugo
31
My Wandering Uterus
I have a secret.
Something is wrong with my body. I could be dying, or maybe it’s nothing at all. In which case, there’s no reason to disclose my secret.
This question of my illness started a couple of years ago, a few weeks before I met Boyfriend. Or at least I think it did. My son and I were on our summer vacation, spending a relaxing week in Hawaii with my parents. The night before we were to return home, though, a painful, angry rash seemed to appear out of nowhere and devour my body. I spent the plane ride back hopped up on antihistamines and slathered with over-the-counter cortisone cream, scratching myself so hard that my nails were caked in blood by the time we landed. Within a few days, the rash subsided, and my doctor ran some tests and chalked it up to a random allergic reaction. But the rash had felt like an eerie foreboding, a harbinger of what was to come.
Something seemed to be lurking inside me, attacking my body over the next several months while I looked the other way (which was, at the time, directly into Boyfriend’s eyes). Yes, I felt fatigued and weak and had an array of disturbing symptoms, but as my condition worsened, I convinced myself that it must be a change in stamina that happens in one’s forties. My doctor ran more tests and found some markers for autoimmune disease but none that could be linked to a particular illness like, say, lupus. He sent me to a rheumatologist, who suspected that I might have fibromyalgia, a condition that can’t be diagnosed with a specific test. The idea was to treat the symptoms and see if they improved, and that’s when the off-label-use antidepressant ended up in my record at the CVS across from my office. Soon I was at that CVS often, picking up cortisone creams for bizarre rashes, antibiotics for unexplained infections, and antiarrhythmics for my irregular heart rate. But my doctors couldn’t figure out what was wrong, and I reasoned that this was a good sign; if I did have a dangerous illness, my doctors would have found it already. No news is good news, I told myself.
Just as with the misery-inducing happiness book, I plugged along, keeping my health worries as private as my writing worries. It wasn’t so much that I purposely hid my medical situation from my close friends and family. It was more that I chose to hide it from myself. Like the physician who suspects he has cancer but delays getting scanned, I found it far more convenient to just not deal. Even as I no longer had the strength to exercise and inexplicably lost ten pounds—I felt sluggish and weighted down even as I became lighter—I assured myself it must be something benign, like, I don’t know, menopause. (Never mind that I wasn’t in menopause yet.)
When I did let myself think about it, I’d go online and learn that I was dying of basically everything, only to remember that in medical school, we students suffered from “medical students’ disease.” This is an actual phenomenon, documented in the literature, in which medical students believe that they’re suffering from whatever illnesses they happen to be studying. On the day we studied the lymphatic system, a group of us felt each other’s lymph nodes over dinner. One student put her hands on my neck and exclaimed, “Whoa!”
“Whoa what?” I asked.
She made a face. “It feels like lymphoma.” I lifted my arms and felt my neck. She was right; I had lymphoma! Several other classmates felt my neck and agreed—I was toast. Better check my white cell count, they said. Let’s biopsy those nodes!
In class the next morning, our professor felt my neck. My nodes were big but within the normal range. I didn’t have lymphoma; I had medical students’ disease.
I probably had nothing now too, I figured. Except deep down, I knew it wasn’t normal for somebody in her forties who used to be a runner not to be able to run anymore and to feel sick every day. I’d wake up tingling, my fingers red and thick as sausages, my lips swollen as if stung by bees. My internist ran even more lab tests, some of which came back abnormal or, as he put it, “quirky.” He sent me for MRIs and scans and biopsies, some of which were also “quirky.” He sent me to specialists to interpret the various quirky labs and scans and signs and symptoms, and I saw so many specialists that I began calling my odyssey the Medical Mystery Tour.
It was indeed a mystery. One doctor thought I had a rare form of cancer (based on lab tests, but the scan ruled this out); another thought it was some kind of virus (starting with the rash); another thought it was a metabolic condition (my eyes were riddled with deposits that nobody could diagnose); and yet another thought I had multiple sclerosis (my brain scan showed spots that weren’t typical of MS, but they could be an unusual presentation). At various times it was thought that I might have thyroid disease, scleroderma, or, yes, lymphoma (again, those enlarged glands; did this actually start back then, in medical school, lying dormant until now?).
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 sy
mptoms 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.
“I don’t want to have to take care of her if she gets really sick one day,” he said over our shared dessert. “If we’d been married for twenty years and then she got sick, that’s different. But why get into it knowing she’s already sick?”
“But any of us could get sick,” I said. At the time, I didn’t think I fell into that category. I thought that whatever I had was temporary (a bug of some sort) or treatable (a thyroid imbalance). Later, as my Medical Mystery Tour got under way, my denial turned into magical thinking: As long as I don’t have a diagnosis, I can postpone telling Boyfriend the extent of it—indefinitely, and maybe forever—if it turns out that nothing’s wrong after all. He knew (sometimes) that I was having tests done and wasn’t feeling “myself,” but I also explained away a lot of my fatigue the way Dr. Cowboy Boots had: I was a busy working mom. Other times I’d make jokes about getting older. I wasn’t willing to test his love for me by letting him think that either I had some physical illness or I was crazy for believing that I did.
Meanwhile, I was so terrified by whatever was happening to me that I kept hoping my symptoms would simply vanish. I thought, I’m going into this future with Boyfriend, focus on that. Which is also why I ignored any hints that we might not be well suited for each other. If that future went away, I would have to contend with an unwritten book and a failing body.
But now that future has gone
away.
So I wonder: Did Boyfriend leave me because I was sick—or he thought I was paranoid for believing I was? Or did he leave me because I was as dishonest with him as he had been with me about who I was and what I wanted in a partner? It turns out that we weren’t that different after all. In the hopes of making it work with a person he genuinely enjoyed, he wanted to postpone his confession for the same reason I did: so that we could continue to be together even though we couldn’t. If Boyfriend didn’t want to live with a kid under his roof for the next ten years, if what he wanted was freedom, he certainly wouldn’t have wanted to take care of me if one day I needed it. And I’d known that about him as early as that dinner-date conversation—just as he’d known I had a kid.
And now I’m doing the same thing—postponing—with Wendell, because the truth comes with a cost: the need to face reality. My patient Julie had said that she always wished she could freeze time in the few days between having a scan and getting the result. Before that call came in, she explained, she could still tell herself everything was fine—but knowing the truth might change everything.
The cost of my telling the truth isn’t that Wendell will leave me, as Boyfriend did. It’s that he’ll make me face this mystery illness head-on instead of pretending it away.
Maybe You Should Talk to Someone_A Therapist, HER Therapist, and Our Lives Revealed Page 23