Why certain illnesses remain mysterious

When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, nonceliac gluten sensitivity, heavy metal toxicity, environmental illness, sick building syndrome—I had started out with the intention of exploring intestinal health as it relates to chronic fatigue and women’s health, but as soon as I turned on my headlamp, women with mysterious illnesses of all kinds came hurtling out of the jungle, like giant moths to a tiny flame.

And so one of the first things I ever did was come up with a clarifying top-ten list regarding the problems contributing to the mysterious marginalization of the mystery illnesses. This list was not exactly a clue in figuring things out, but rather a series of clues making it clearer and clearer that there really was a veil tightly drawn before anyone who was trying to figure things out.

More than a decade later, the list is still as useful as ever.

MICHAEL PETER ANCHER, DEN SYGE PIGE (THE SICK GIRL), 1882, OIL ON CANVAS, 31 1/2″ X 33 1/2″. PUBLIC DOMAIN, VIA WIKIMEDIA COMMONS.

Problem 1: Invisibility

Each of the chief mysterious illnesses is largely invisible, at least according to our current standards of seeing. A typical disease presents something a doctor can observe, either under the microscope or in an examination. But not these diseases. There are no tumors, no elevated blood count, no pallor. I noticed I had to catch myself many times in my interviews—a woman would open her door, and look so absolutely normal that I couldn’t help but think I’d finally found the lazybones who was just exaggerating to escape from the pressures of real life. I had to remind myself that this was exactly what people thought (and still think) about me.

But if those women just had some piece of data to hold on to, some scan to hold against the backlight, to show the world the contours of her problem, that would make a huge difference. However, for such symptoms as chronic pain, fatigue, and irritable bowels, there are no scans. And this brings us to a critical point that cannot be underscored enough: the available standardized tests for the mysterious illnesses are very crude. They were in 2006, when I started looking into the matter, and they still are in 2020. Sophisticated tests are produced by sophisticated research. Which brings us right to Problem 2.

Problem 2: No Research, No Funding

This is a chicken-and-egg issue. You can’t get funding to research a disease that is not considered serious or real, but a disease is not likely to be considered serious or real if there is no good research or clinical trials associated with it.

Chronic fatigue syndrome is the most glaring example, the funding for which has been historically minuscule and mismanaged. Currently there are $14 million allocated for research for CFS from the government, compared to $6.3 billion for cancer research. That is, 0.2 percent. Fibromyalgia receives the same—$14 million, a number that comes in at the very bottom ranks of what the NIH chooses to invest in every year. Even the funding allotted for all the autoimmune diseases, which outnumber the incidences of cancer, HIV/AIDS, and heart disease combined, is just $806 million, or an eighth of the cancer fund.

Interestingly, Lyme disease actually serves as a good reminder of how important research is. Lyme disease spent about thirty years as one of the chief mysterious illnesses—and the way they partially demystified it was when they developed a better blood titer. For decades prior, most Lyme patients were often considered as hypochondriac as the rest of us ladies. Nowadays, Lyme is one of the first tests they run if you come in complaining of the usual mysterious problems. This could have been a lesson that when a disease doesn’t show up in the lab tests, but corresponds identically to the anecdotal evidence of thousands of other case histories, that should speak to the inadequacy of the tests, not the inadequacy of the patients.

Alas.

Problem 3: Vague Symptoms

Achy? Yeah, I got aches and pains, too, lady.

Problem 4: Myriad, Overlapping Symptoms

For example, mold illness, Lyme disease, and the Epstein-Barr virus—three distinct, separate problems—can have almost identical achy, fatigue-y, irritable-bowel-y symptoms, yet no two cases are ever exactly the same. Any Lyme specialist will tell you that Lyme manifests in a range of expressions from individual to individual—more so than most illnesses. The same is true for Epstein-Barr, mold illness, and indeed, all the mysterious illnesses. There are simply so many symptoms associated with each illness, you never know which ten of the one hundred the patient is going to present with. Thus it is extremely difficult to figure out just which permutation of the problem the patient actually has, and misdiagnoses are rampant. Furthermore, the sheer number of symptoms that tend to accompany these problems—each manageable on its own, but terrible in the aggregate—is totally overwhelming for a doctor. Night sweats, acne, abdominal distention, dry eyes, lower back pain, left ovarian pain, painful periods, exhaustion, low blood pressure, dizziness, insomnia, sensitivity to dairy, sensitivity to gluten, sensitivity to nightshades, stiffness, constipation, diarrhea, constipation and diarrhea—

If I were a doctor, I might be running in the other direction, too.

Problem 5: Shame

If a woman’s disease happens to veer in any way toward the vaginal, the urologic, or the colorectal, then she is seriously out of luck—too unpalatable for any awareness campaign, too unsexy to start a blog, too vago-uro-colo to merit a ribbon or a million-mom march. Yet these female-centric symptoms are very common with the mysterious illnesses. That means there are millions of miserable women who are not getting the care they need because they are essentially afraid to be the gynecologically squeaky wheel.

Problem 6: Bad Treatment Options

Let’s say you do luck out and get a doctor on your side who wants to help. Well, the next problem is that there are almost no tried-and-true allopathic protocols that actually help. Thus, not only does the doctor have a chronically complaining patient with invisible symptoms—when he tries to take her seriously and test out some treatments, she doesn’t get better. I can see where this would frustrate a doctor and put him back to square one of disbelieving. But I can also see that sophisticated protocols are the product of sophisticated research and implementation.

Problem 7: Bias

You can be sure that if 85 percent of fibromyalgia patients were men, rendering them unable to work from extreme fatigue, bone-deep pain, and mind fog—there would be no problem getting the funding and research to look into this scourge upon the modern male workforce. And so Problem 7 brings us right to Problem 8.

Problem 8: Fear and Loathing of the Female Patient

My own father has been known to ask a certain type of chronically complaining woman if her left elbow hurts when she urinates—a completely bullshit question—and will be amused when the answer is yes. In part, this is because my father is a jokingly self-described egomaniacal chauvinist. (Note: my father is also a very caring physician, if prone to pranks and helping people take themselves less seriously.) But in part, and I hate to say it:

Some women can be very—how shall we say—tenacious about their health. And this tenacity is almost regardless of how healthy they are.

Believe you me.

But on the other hand, let’s be fair:

Isn’t it vital that someone in the family be vigilant about the family’s health? While women are frequently criticized for dragging their husbands to the doctor, the truth is that women frequently save their husbands’ lives. And their own lives. Not to mention that women are also much more active in making sure their children receive regular medical care and checkups, which is a good thing.

But unfortunately, this positive interpretation is not the party line. The party line is that women are irrepressibly worried about their bodies for no reason at all, and seek medical attention more often than men purely because they are the most nervous of Nellies.

Problem 9: Our Broken Health Care System

This merits an entire shelf of books unto itself (and there are of course already hundreds), but the fact remains: the American health care system is not functioning well. As noted, if you have a complex disease that is difficult to diagnose, then a fifteen-minute HMO doctor’s visit and quick-fix prescription for pain medication is clearly inadequate. If you’re healthy as a horse, a fifteen-minute visit is probably inadequate.

Furthermore, most medical schools do not offer almost any training in nutrition, and proper nutrition is the foundational and easiest way to prevent and sometimes reverse many chronic illnesses. Just that statement alone, “proper nutrition is the foundational and easiest way to prevent and sometimes reverse many chronic illnesses,” is anathema to most medical students.

But in the end, the roots of all these problems—not enough time to listen, no emphasis on healthy behaviors, and no robust systems to help patients with behavioral change—come back to the same problem.

They are not wildly profitable.

Virtually every problem in the health care system can be understood by following the money.

If something is not a cash cow, it isn’t just ignored—it will often be actively campaigned and lobbied against as dangerous, indulgent, or pseudoscience. It is a sad state of affairs, but in no way a secret state of affairs, and it can’t be emphasized enough.

Anyway, I promise we’re coming to the end. Did I mention it’s complicated?

And we have yet to talk about the most intriguing problem of all:

Problem 10: These Epidemics Are New

Fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Hashimoto’s disease, Lyme disease, lupus, polycystic ovary syndrome—in 1960, these were all rare. But in the past fifty years the new cases of these diseases have been raining down from the sky like hail, frogs, and locusts.

Fifty million women in this country suffer from these illnesses, at a very low estimate.

That’s one in four women.

And that, girls, is a lot.

*

So this is how it began.

After several years of fieldwork in this area, I casually remarked to my friend Elena that I had begun work on a book that would be called The Lady’s Handbook for Her Mysterious Illness. I joked that it would be a modern everywoman’s tale, an Odyssean adventure—complete with mysteriously sick sirens, stethoscope-wearing cyclopses, and an epic intestinal battle. And this friend of mine had (of course) dealt with a horrible mysterious illness of her own, so she was enthusiastic. Encouraged, I went back to the business of sketching out my pet project, wrestling over important questions, like which was the best chapter title, “Yeast of Burden” or “The Red Vag of Courage.”

But then a curious thing happened—something that would happen over and over again during the next decade. By the end of that week, I received emails from six women I had never met. They were friends of Elena’s, and they wanted to share their stories for the project. They all had mysterious maladies—from post-treatment Lyme disease syndrome to candida to chronic fatigue—and we emailed back and forth. And in a few weeks, as they put the word out, women started popping up everywhere, describing to me in the minutest detail the function and dysfunction of their intestinal tracts. We would compare cupboards full of supplements, occult healing modalities, and caches of our rogue research. But what they mainly wanted was for someone to listen to them, and that I could do. I listened to more than two hundred women of all sorts—younger, older, richer, and poorer. I listened to stories of how their own bodies had slowly gone to pieces, or how their daughter’s body was unraveling right in front of them, or how their best friend was vaguely (and often not so vaguely) deteriorating.

On my listening tour, I began to have the sense that my pet project with the joke chapter titles and the strong stances on microbiota and the patriarchy was actually the thing these women had been looking for all those lonely afternoons spent wandering Barnes & Noble, coming up empty among the self-help books, the fad diet cookbooks, and the gentle pastel books about women’s health.

And I confessed to myself, it was the thing I had been looking for, too.

And this is how The Lady’s Handbook for Her Mysterious Illness came to pass—a book designed for aunts, coworkers, sisters, and girlfriends alike—a book to keep under her pillow late into one of her dismal, insomniac nights—a book to share with her support group, or family, or book club—a book bearing a very simple message:

You are not crazy.

And most important, you are not alone.

(Source: The Paris Review)