And yet women suffering from chronic pain are often not taken seriously by their doctor—a real phenomenon that is well documented, and has real consequences.
I speak from experience—this is what happened to me.
It is perhaps too much to summarize here, but let me try: I had a garden variety UTI, I underwent a botched urologic procedure, I became septic—and overnight I developed severe chronic fatigue syndrome, severe aching tip to toe, severe gastrointestinal problems and the most severe pelvic pain you can imagine.
Healthy and normal on a Tuesday; completely through the looking glass by Friday.
And yet, as I began to see doctor after doctor, and they couldn’t come up with a diagnosis or name to explain what was wrong with me—a new diagnosis began to emerge: That somehow this complex colo-recto-uro-vago-fatiguing problem was actually all in my mind.
As my tests came back negative one by one, the whole thing was deemed psychosomatic, and unworthy of further investigation or empathy.
A message that turns out to be incredibly common.
And like most other patients like me, in the absence of a diagnosis or help from the medical establishment—I eventually set out on my own to figure it out on my own.
And I did. At least as well as anyone can figure out the unresearched, unrecognized mysterious illnesses.
Along the way I also met hundreds of women like me—and at a certain point decided we needed a book. Something to give a voice to the millions of (mostly) women who suffer from unnamed or misunderstood conditions: fibromyalgia and chronic fatigue syndrome, post-treatment Lyme disease syndrome, the autoimmune diseases, PCOS, POTS, endometreosis, chronic pain and the many more.
My pursuit of a diagnosis and treatment for my own illness became The Lady’s Handbook for Her Mysterious Illness, and it is a memoir with a mission. It is a book to make the invisible visible, and to assure this community now and forever:
You are not crazy, and you are not alone.
Listen to a sample from The Lady’s Handbook for Her Mysterious Illness:
Below is an excerpt from The Lady’s Handbook for Her Mysterious Illness, released in March:
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 aller- gic 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.
First there was my close friend Courtney, who told me that in addition to a series of undiagnosed intestinal complaints, she also had Hashimoto’s disease. Then there was Jones, another friend saddled for a decade with unexplained symptoms, who told me she also had ulcerative colitis. Both said the same thing: the Hashimoto’s and the UC were crosses to bear, but even on their medications, they were limping along in their lives with an overflow of other debilitating symptoms their doctors said were unrelated or unimportant.
I could of course empathize, but I was confused. And the sheer number of women like them, thunking down around me, made me nervous. What did Courtney’s Hashimoto’s disease (a disease of the thyroid) (thunk) have to do with Jones’s ulcerative colitis (a disease of the bowel) (thunk)? And why were they both accompanied in rapid succession by women with lupus, multiple sclerosis, and Crohn’s dis- ease (thunk, thunk, thunk) with questions about fatigue and brain fog and muscle pains and back pain and unusual periods? These aren’t mys- terious illnesses—I thought indignantly—these illnesses have respectable names! Lupus, MS, Hashimoto’s, UC, Crohn’s—those are all known diseases with proper names and well-sourced Wikipedia pages. (To someone without a diagnosis, things like names and reputable Internet resources are like the holy grail.) Furthermore, my friends’ illnesses affected completely unrelated parts of their bodies—kidneys, myelin sheaths, thyroid, bowel. It was distracting, and I wished they would leave me alone so I could focus on the task at hand, which was already confusing enough.
But there was no ignoring them. These girls were as WOMI as they come, and they wanted to be heard. They all reported the doctor merry-go-round, the many alternative treatments tried and failed, and the inability to find a physician to take their dis-ease seriously. Like the rest of us, they suffered the medications that suppressed one symptom and created several more—not to mention the terrible invisibleness, and the experience of hearing But You Look Just Fine! so often they could just cry.
And then there was the most important group of details: that telltale set of symptoms that snaked like a glittering black thread through their stories—the myalgias, the fatigue, the allergies, and the bowel problems.
We were freakishly similar.
The clues were everywhere.
But no matter what I did, I could not connect the dots. I could see there was an elephant in the living room—but what was wrong with the elephant, I had no idea. I paced. I pondered. I made tea. I studied the leaves. I studied the night sky. I couldn’t make sense of it.
And then suddenly, I could.
Standing there, head back, taking in the whole cosmos—a huge, meandering constellation came sharply into focus.
Hashimoto’s, ulcerative colitis, multiple sclerosis, lupus, Crohn’s, and sometimes fibromyalgia:
All autoimmune diseases.
In retrospect, it’s hard to believe there was ever a time I didn’t know this. We all know a cancer when we hear one. Why should this be different?
According to the American Autoimmune Related Diseases Association, nine out of ten people can’t name an autoimmune disease off the top of their head. Nine out of ten seemed like an awful lot, and while this did feel like an unusual fact, I shelved it along with all the other unusual facts and data that did not compute. (A very crowded shelf, bowed and sagging.)
But as I continued along, researching and observing the patterns and behaviors of my subjects—I was astounded to find in my notes that a lot of the illnesses other WOMIs had come to me with were in fact autoimmune diseases, and I had simply not known it when I had conducted the interviews. Sjögren’s. Raynaud’s. Guillain-Barré. Rheumatoid arthritis. Celiac disease. Myasthenia gravis. Type 1 diabetes.
Autoimmune, every last one.
The next clue I already knew instinctively—I have named my book after this clue—but I was vindicated when I finally looked it up. The one thing that is obvious to everyone—to me, to doctors, to skeptics—is that this massive elephant in the living room has one very clear defining trait.
This elephant is a she.
You do not need an NIH statistic to prove this, you can just look around. It’s not really Uncle Bernie’s problem, it’s Aunt Soozy’s. You know it, Soozy knows it, and so does poor Uncle Bernie.
But the NIH is on our side here, as well. Did you know:
Eighty-five percent of fibromyalgia patients are women. Eighty-five percent of multiple sclerosis patients are women. Ninety percent of Hashimoto’s patients are women. Eighty percent of chronic fatigue syndrome patients are women. Seventy-five percent of Lyme patients are women. Ninety percent of lupus patients, women.
With a few exceptions such as Crohn’s disease, which affects men just slightly more, this ratio is true almost across the board. Seventy-five percent of all autoimmune patients are female. And for the true mystery illnesses, the disparity is even greater—often 8:1, 9:1. This should give anyone pause—not simply because there are so many diseases affecting women these days, not simply because that discrepancy is very large, but for a more serious reason:
No one seems to notice.
I am consistently surprised to find that the numbers (when I look for them) don’t just confirm my suspicions—they dwarf my suspicions. The numbers, when I look for them, are sitting there, hulking, huge, unmissable, staring at me, wondering where I’ve been. Wondering where everyone has been.
I hope the ax doesn’t grind too hard against the stone to say it, but this being far and away a Lady’s problem goes a long way toward explaining why it hasn’t been taken very seriously at all.
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