The Lady's Handbook for Her Mysterious Illness

 

Dear Reader,

There may exist a graceful and elegant way to begin one’s gynecologic and colorectal memoir, but it never does spring to mind.

Let us start then with a story. We can travel back to where it all began, and for a moment leave the particulars behind. That sounds much nicer—lovely even—considering it all began so many years ago with a cool, luxuriant swim in Walden Pond.

~

I remember it well. The heat was heavy, I was a summer student at Harvard with no air-conditioning, and Walden beckoned for the reasons it always will. Though I suppose the busloads of tourists beached on the imported sand should have sounded some instinctive alarm when I arrived, they didn’t. I walked right on past and made my way to the side of the pond where the water was still and the snorkelers out of sight.

I remember walking into the water. I remember floating on my back. I remember the coolness and the peace and the poetry of the place, and I remember feeling like I couldn’t ask for anything more.

The next day in the emergency room, I had quite forgotten all of that.

A urinary tract infection, known as a UTI, is a very painful but easily treatable infection of the urethra. Most people describe it as “peeing broken glass,” and I would have to agree with most people.

But my ER doctors patted me on the back as they ordered up the standard antibiotics and I bounded off to the pharmacy, clutching my prescription, counting the minutes in the twenty-four hours they told me it would take to go away.

Fifty-six hours later, I was back in the emergency room. It had not gone away.

In fact, it did not go away for six months. “How strange,” the college physician said as he took my history. I had never been sexually active, which made things particularly challenging, both diagnostically and emotionally. I was a senior in college, and it was my time. I even had the right person picked out.

But the UTI stayed. We joked and called it my PUTI, or permanent UTI, and I laughed along with the rest. But in private, in the bathroom, I was profoundly unamused.

~

This prologue is typical of women like me. A simple and innocuous medical event—often with a gyno or gastro tilt—that should have resolved simply, but didn’t. She thinks it is just another one of life’s ups and downs, when in fact Up is about to become a distant memory.

There is a secret society of sorts that no one—not even the members—has heard of. We don’t look alike, we don’t dress alike, and we’re from all over. There is no secret handshake, no meeting place, no cipher.

We are the women with mysterious illnesses, and we are everywhere.

~

When I went home for Christmas just outside of Washington, D.C., my parents—who are both top-notch physicians—made an appointment for me to see Washington’s preeminent, top-notch urologist.

Dr. Damaskus said I seemed like a nice, normal young woman who would probably like to get back to the business of being able to pee and have sex freely, and he saw no reason why he couldn’t make that happen. He determined I no longer had an active infection—and then proposed a procedure, to be done right there, that day, in the office. As he described it, he would insert a small instrument into the urethra, rip it, and this would solve the problem.

I frowned.

But Dr. Damaskus assured me it was the only option, should I want a normal life again—the gentle ripping, he explained, was more of a light stretching of the tissue, and it would interrupt the muscle spasm and break the cycle of pain. He handed me a paper gown.

I’m almost nostalgic for my naïveté. I took the gown, steeled my nerves, saddled up, and put my feet in the stirrups.

The procedure began benignly enough with a small swabbing of topical lidocaine, but in the next step a device not unlike a very small car jack was inserted in the urethra and then ratcheted out several notches until the urethra, as promised, tore. It was a blinding pain that no amount of lidocaine would dull. He peeked over the paper blanket and asked if I thought he had gone enough notches. I was crying too hard to do anything but nod. He went one more notch.

Dear, patient reader, I have not forgotten about you, or our purpose here—or the cautionary voice in the back of my head whispering something about too much information. But I think this history is important. So before we move out of this reverie, let me come quickly to the end of the beginning of our story.

That night, after Dr. Damaskus sent me hobbling back on my way, intuition’s warning bell finally took up its low, steady thrum. I sat silently through dinner, and put myself to sleep early. Something was not right—something flulike, but menacing, was starting to bristle. Everything hurt, not just my urethra. My ears hurt. My teeth hurt. I fell asleep, my hands clenching and unclenching of their own accord.

When I woke, I was on the floor, quaking with rigors, drenched in sweat, and making a very bad noise. My mother was calling the hospital and dragging me toward the car. I had become septic, an infection of the bloodstream that would have ended badly if my mother weren’t such a top-notch physician. We were at the hospital in minutes.

I was not witness to the miraculous save, but I heard all about it when I woke up. Top-shelf, nuclear-grade antibiotics pumped into me by the gallon, and it seemed like every doctor at Sibley Memorial Hospital (except one Dr. Damaskus) came to sit by my side, making sure the doctors’ daughter pulled through. I was extremely well taken care of. I was going to live. It would all be all right.

By the next day, everyone had gone back to their private practices, wishing me well, which I very much appreciated. The only problem was (and I hated to be a stickler)—I wasn’t all right. I was still aching all over, badly, even though the infection was gone. I had a fever every afternoon, and intense pain all down my legs. The broken-glass pain was starting to radiate out to the surrounding muscles in the vagina, rectum, and bladder. My bowels seized up and stopped working. I itched.

“Strange,” my doctors murmured, making notes. “How very strange.”

They ran dozens of tests, but everything came back negative. At a loss (and at my insistence), they sent me back to school with painkillers and portable IV antibiotics. They said it would slowly all start to get better, and I believed it. When had my body ever done anything but get all better? I was ready to get back to the business of peeing and expressing my sexuality freely. I would carry my little IV from class to class if that’s what it took.

But my body did not get better.

Class after feverish class, night after achy night, and morning after urethrally excruciating morning, I could not deny: it was getting much worse.

And in the most mysterious ways.

I was on so many medications and getting so sick so fast, it was like a rabbit hole had opened up beneath me—that I was falling slowly past the clocks and the candlesticks, and that my parents and doctors were peering over the edge, quietly watching me float down and away.

~

The entire point of The Lady’s Handbook for Her Mysterious Illness is this:

It would have been helpful to know what a well-trafficked rabbit hole that was.

~

The unfortunate but innocuous series of medical events.

The gallons of antibiotics and fistfuls of painkillers.

The severe digestive issues, gynecologic issues, joint pain, itching, and fatigue.

The referrals, the specialists, the puzzlement.

The growing doctor-patient antipathy.

The dramatic health avalanche.

The clocks. The candlesticks.

The despair.

I thought I was the strangest medical case on the East Coast.

I was wrong.

~

Seventeen years later, I have become a well-known woman with a mysterious illness.

In the early years of this distinction, other women with mysterious illnesses would frequently introduce themselves to me, often at the most unexpected moments—at weddings, in elevators, or leaning across a bank of guests at a crowded Thanksgiving table—all wanting to discuss their own mysterious maladies. I just had to speak the words Candida or Subclinical Hypothyroid—or the most potent of all, Gluten—and three heads would rubberband in my direction. They either knew a woman with a mysterious illness, were married to a woman with a mysterious illness, or were themselves a woman with a mysterious illness. While other people grilled kebabs, we would speak discreetly and in low tones about constipation. When the daiquiri pitcher appeared from the kitchen, we would duck our heads to discuss whether or not daiquiris were gluten-free. At elegant cocktail parties, women were constantly pulling me into corners to talk about their vaginas.

You most likely know one of us already—a coworker, an aunt, a sister—some beleaguered old girl endlessly dealing with her health issues. She’ll be reluctant to talk about the particulars but noticeably lacking in a solid diagnosis. Most people privately agree she actually suffers from an acute case of hypochondria.

This woman may not know it yet, but she is in the club.

~

WOMI.

wo.mi | whoa-mee | noun

A woman with a mysterious illness.

~

I had to make this word up myself. I would have preferred a committee, or a wealthy patron—whoever is in the business of naming—to do it for me, but no one volunteered. I’d also have preferred something more dignified than WOMI—something with gravity, preferably in the Latin. Something that provoked the right response, which in my case is, “Holy fucking shit.” But because there is no name for what’s wrong with me, people don’t say holy fucking shit. They ask if I have tried green juice or positive thoughts.

Having a word helps.

Either way, I am sure you know a WOMI already. A spouse, a little sister, a cousin.

The signs are unmistakable. She is exhausted, gluten-free, and likely in possession of at least one autoimmune disease. She is allergic to ____ (everything), aching from tip to toe, digestively impaired, and on uneasy terms with her reproductive system. She is addled, embarrassed, ashamed, and inflamed.

She is one of us.

~

The following scene is unfolding in an office in your town every day, perhaps right now at this very moment:

Jane Doe crosses her ankles in the waiting room, absently turning the pages of People magazine. She looks around often—now at the oversize clock, now at the receptionist, now at the generic watercolors on the walls.

“Ms. Doe,” a flat voice calls out. “Dr. Bowels will see you now. Second door on the left.”

Jane takes a seat in the doctor’s office, regarding the diplomas on the wall. On the desk stands a life-size replica of the human intestinal tract. When Dr. Bowels bustles in, he introduces himself as he looks over her chart for what is clearly the first time.

“Now, Ms. Doe,” he says cheerfully. “What can I do for you?”

The interaction begins very seriously, a furious scribbling of notes, a furrowing of the brow, a lot of nodding. The usual diseases are ruled out and Jane confirms she has been tested, twice, for everything under the sun. Her primary symptoms are severe constipation, distention, and pain in the lower left quadrant of her abdomen. As the doctor pages through her thick medical file, Jane takes the opportunity to share some of the stranger nonbowel symptoms she has experienced—aching in the bones, fatigue, itching, unexplained gynecologic symptoms, memory problems, lower back pain—but the words are scarcely out of her mouth before she wishes she had kept her addenda to herself. She can see the red flags rising behind his eyes, and the note taking slowly tapers off. Before she knows it, where once Sherlock Holmes scribbled furiously, hot on the trail, bent on solving her mystery—he now leans back in his swivel chair, tip of his pen in the corner of his mouth, checking his watch. His look is saturated with understanding, for he has solved the case.

What we have here is not a rare, tropical disease, Watson. What we have here is an unhappy woman, badly in need of an antidepressant.

~

Six years went by before I was aware of the proverbial Jane Doe.

And again, I come from a family of excellent doctors. My mother, my father, my stepfather—even my grandmother was a famous endocrinologist. I am the absolute last person who should have walked off a medical cliff without so much as a Wile E. Coyote deadpan to the camera.

But this is how it always begins. The appointment with Dr. Bowels will likely be followed by a similar experience with Dr. Vulva, only to be repeated with Dr. Rheuma, who sends her on to Dr. Uro, and then Dr. Neuro, followed by Dr. Thyro, then possibly Dr. Chiro, and finally cycling back to Dr. Bowels. Since no lightbulbs have gone off over anyone’s head, off she goes to Dr. Freud.

This long and expensive chain of events is not only common for this type of patient—it is the norm.

Sarah Ramey 

in, The Lady's Handbook for Her Mysterious Illness