Every month, the New York Times Magazine runs a feature called “Diagnosis.” It’s about hard-to-solve medical mysteries: women with strange spots, men with failing kidneys. The stories are told in fits and starts, and readers are invited to weigh in and guess what’s actually wrong with the patients. In the end, the medical mystery is solved by a clever team of doctors. The patient’s problems are rarely neatly resolved, but always managed in a hopeful and determined way.
“Diagnosis” was often my favorite thing to read in the magazine on Sunday mornings, satisfying my inner hypochondriac and detective — until I found myself living one of those medical mysteries.
I was upstate with some friends when the itching began. At first it was localized in a thin band across my thighs. It seemed like dry skin, so I slathered on lotion and thought nothing of it. But then the itching continued, and spread. It was up my legs and down them. It was on my hips, my stomach.
I traveled to Los Angeles, and the itching continued. Despite the warmer climate, my skin was red and bruised from the constant scratching. I made multiple stops at the pharmacy, investing in a tub of medical grade Aquaphor, hoping to get some relief. I bought Cortisone creams and took oatmeal baths.
After two weeks of nearly nonstop, skin-tingling itching, I went to my doctor, who shrugged, put me on a battery of over-the-counter antihistamines, and sent out a vial of my blood for testing. “Did you know that unspecified itching could be a sign of blood cancer or a liver problem?” he told me cheerfully.
I woke up in the middle of the night with blood on my stomach from scratching myself.
Eventually I was told I had dermatographia urticaria, a form of hives where the body produces histamines — those substances your body produces during an allergic reaction — unchecked. (It also goes by the sexy moniker of “skin writing,” because sufferers are often able to make words and images appear on their skin by pressing in with their fingernails or a stick.) I was given a steady regimen of antihistamines to treat it — Allegra and Zyrtec during the day and Benadryl at night, plus a steroid cream to put on my legs and arms.
The itching persisted.
My back became a map of welts, a series of sharp raw lines and blister marks. During meetings I clawed at my upper arms. On subway rides, my hands dove down my jeans to relieve some errant itch on my hip bone or belly. I woke up in the middle of the night with blood on my stomach from scratching myself.
One day at a store, I tried on a knee-length dress and the saleswoman remarked on the welts and marks all over my legs.
“Looks like mosquitoes must really love you,” she said. I was mortified that my body had become some kind of hard-bitten and ugly shell. I nodded and made a joke about how sweet my blood must taste.
In a magazine, not having a diagnosis is a fun distraction for a few minutes. In real life, it’s a tortuous exercise of doctor’s visits, insurance co-pays, and expensive medications.
I made another doctor’s appointment. And then another. I saw the dermatologist and the allergist. I went back to my primary care physician and begged for some kind of magical end to the itch. I wanted to be put out of my misery. I stopped exercising and going out. I only had energy for scratching.
My original diagnosis, which had no end and no solution, no New York Times Magazine resolution, was replaced with another vague proclamation: something called pruritis, a fancy way of saying unspecified itching. Doctors, it turns out, just have better names for when they don’t have answers.
Pruritis is, according to my allergist, fairly common. To really treat it, you have to determine the underlying cause, except sometimes there IS no underlying cause. In my case, the underlying cause — if any — is unclear. According to WebMD, it often affects elderly people.
I’m deathly afraid that it’s beyond my body, that it’s become a part of me, like breathing.
Which is funny, because my bedside looks now like it could belong to a lady in her eighties, riddled with pill bottles and prescriptions. There is the Allegra and the Zyrtec and the Benadryl and Zantac, plus the prescription antihistamines, the hydroxyzine and the levocetirizine, the prednisone, and the sleeping pill to offset how jumpy the prednisone makes me. My bedside table would make any consumptive Charlotte Brönte heroine jealous.
I take all of these pills because I hope that the itching sensation will stop, but I’m also deathly afraid that it’s beyond my body, that it’s become a part of me, like breathing. The desire to scratch what itches has moved from the physical to something heavier — the itch is as much in my head as in my skin and under it. Letting go of it, getting relief from the relief that scratching provides, is something that’s much harder to figure out.
But there is another thing: I have come, in these last few months of itching and scratching and noxious welts, to realize that I missed the point of my body for so long. When your body betrays you, when you have to focus all of your time and attention on just being well, all the vanities you used to care about — how flat your stomach is, or how little or much you weigh, or whether your complexion is perfectly clear — don’t compute anymore. There is something freeing in letting go of these old habits, which are themselves a kind of anguishing disease.
For as long as I have been cognizant of myself as a female, I’ve been critical of my body — how it looks, how it rates, how it manages to fit or not against other bodies that I think are better than it. This has lead me to at times starve myself, or exercise too much, or obsess over my thighs, or my stomach, or my butt. When I think about all the hours I have wasted criticizing my body for the way it looks — a body that used to actually work fairly well, that didn’t keep me up itching and scratching in the middle of the night — I want to scream.
It came so late, but I now understand that my body — that any body — is not simply a competitive space meant for judging success or failure.
That my body simply functioned, that it allowed me simple pleasures and a life without itching, seems so foreign now. And yet! I was so miserable then, so unsatisfied! So aware of the cavernous gulf between what I wanted my body to be — lithe, tall, and concave – and what it actually was. I fixated on my body’s failings with laser precision, and greedily used up its energy on petty battles, focused on an improbable, impossible goal out of reach and in the middle distance. It came so late, but I now understand that my body — that any body — is not simply a competitive space meant for judging success or failure.
I still wake up itching at odd times. Today it was at 4:30 in the morning. I groped around in the dark for another Benadryl and tried to go back to sleep. I still don’t know why or how or if this is going to end, but the feeling of it is exhausting. I want my hands to stop moving endlessly over my skin. And I want my mind to quiet. I want my body to work like it used to, the way it did when I took it for granted.