The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

But what is less well-known is that there is also a silent epidemic of chronic illnesses that are often marginalized, contested, or even unrecognized—illnesses that include autoimmune diseases, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), post-treatment Lyme disease syndrome (or chronic Lyme disease, as many patients call it), dysautonomia, mast cell activation syndrome, fibromyalgia, and now, on a scale that is only beginning to be recognized, long COVID.

yep

To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework.

Yep

“I think you might have endometriosis, a chronic inflammatory disease where tissue from the uterus gets out and coats the abdomen and other organs, causing pain,” she said. “But it doesn’t really matter unless you want to get pregnant: it can cause infertility. Later we might want to address it with surgery. For now, I’d just take ibuprofen during your period.”

Yes it does matter

I found myself thinking that it seemed like my mother, despite undergoing chemotherapy, had more energy than I did.

Relatable

Both diseases were autoimmune in nature. The third aunt had ulcerative colitis and told me that a cousin did, too. “They’re all connected,” one explained. I’d

Yes they are all comnected

My ability to accumulate information felt like the only control I still possessed.

From the start, the study of autoimmunity has been characterized by uncertainty and error.

Interesting

In the decades since, scientists have discovered an estimated eighty to a hundred autoimmune disorders, among them lupus, multiple sclerosis, type 1 diabetes, and rheumatoid arthritis. But exact numbers are hard to come by, because researchers still do not agree on how to define an autoimmune disease.

Even the term “autoimmune disease” may be imprecise: it is not known in every case whether autoimmune dysfunction is the cause of the disease or a consequence of

One Harvard researcher told me that medical science’s understanding of autoimmunity lags a decade behind its understanding of cancer (a category of disease that is itself still only partially understood).

is clear that there is a genetic component to autoimmune diseases; they tend to cluster in families, and many people end up with more than one such disease.

cases of autoimmune disease are rising at almost epidemic rates in affluent Western countries. Indeed, studies of twins suggest that autoimmune diseases are one third genetic and two thirds environmental, Rose told me.

Interesting About the enviormental aspect

Today, the Autoimmune Association (also known as AARDA) estimates that as many as 50 million Americans live with autoimmune disorders, which would make it one of the most prevalent categories of disease, ahead of cancer.

A 2020 study found that incidence of antinuclear antibodies (ANA), a common biomarker of autoimmunity, has risen significantly in certain age groups since 1991, tripling in adolescents.

Wonder Why so many adolescents

approximately 80 percent of autoimmune patients are women, though a handful of autoimmune diseases overwhelmingly affect men.

Black women and Hispanic women are diagnosed with lupus at close to three times the rate of non-Hispanic white women and have a mortality rate that is between two and three times higher than that of white women. (And yet women of color remain underrepresented in clinical trials,

they are the leading cause of morbidity in women,

According to AARDA, it takes an average of three years (and four doctors) for a sufferer to be given a diagnosis of an autoimmune disease.

tests often show the presence of disease only when 80 percent of the organ under attack has been destroyed. By that time, as he put it, “The train’s gone off the tracks.”

Here was a group of people—rich, middle-class, poor—who were connected by one thing: the inability of doctors to alleviate their symptoms. Often, their employers were unsympathetic.

It’s so frustrating that I have such good days, then I wake up and out of no where I feel like death. I’m sad, my head hurts and I feel like I could cry and I’m angry with everyone. I call it my “black hole.” . . . I’m in the “black hole” now, honestly I’ve learned how to hide it from everyone. How truly sad is that?

But the nature of many immune-modulated or inflammatory disorders is to attack in cycles, to flare.

Going to dinners with friends became so taxing, despite my hunger for company and conversation, that I rarely left my house. I didn’t know how to explain to others what was going on. I appeared fine, after all. (“You look great,” people kept saying, almost in disbelief.)

Hate the "well you look great"

fatigue. (Such an empty word: it sounded like I meant I was tired, whereas I kept imagining my body’s mitochondria were sick, like those of little Charles Wallace in Madeleine L’Engle’s A Wind in the Door.)

Didn't Know mitochondria were in that book

Along the way I ordered books about adrenal fatigue, a diagnosis that is not recognized by Western medicine but that many chronically ill patients consider to be a key factor in unexplained exhaustion.

Interesting - might do more research on this

dysautonomia, or dysfunction in my autonomic nervous system.

I have a form of this called pots

“It is more important to know what sort of person has a disease than to know what sort of disease a person has,” the ancient Greek physician Hippocrates

Interesting

Presented with six patients who have abdominal pain, Ted Kaptchuk, a professor of medicine at Harvard Medical School, points out in The Web That Has No Weaver: Understanding Chinese Medicine, “the Chinese doctor . . . distinguishes six patterns of disharmony where Western medicine perceives only one disease.”

Today, Western medical science typically conceives of a disease as falling into one of three categories. The first consists of diseases with a single identifiable cause, like smallpox or strep throat—what scientists call a “specific disease entity.” The second consists of diseases that are (as we might say colloquially) “all in your head”—the convictions of illness known as “conversion disorder,” or plain old hypochondria, embodied by Woody Allen’s character in Hannah and Her Sisters, who is convinced first that he has a malignant melanoma, then that he has a brain tumor. (“Do you hear a buzzing? Is there a buzzing?” he anxiously asks his secretary.) The third category encompasses diseases or conditions that are accepted as biologically real but are believed to be caused or exacerbated by stress and the mind, such as panic attacks or ulcers. (Western medicine generally treats mental illness as a fourth category altogether.)

For years, medicine has found it easiest to conceive of the first and second categories: assigning some conditions to the category of measurable “real” disease while labeling others psychosomatic diseases best treated by a psychiatrist. But something like autoimmune disease or long COVID falls into the third category of illness; it combines biology and biograph...

As the medical historian Charles Rosenberg asserts, “There is no simple, one-dimensional way to understand those entities we call autoimmune diseases.” Autoimmune diseases have biological markers, but they come and go, and patients’ flares can be exacerbated by stress. Such diseases require us to think about illness in a more complex way than we usually do, a more complex way than twentieth-century medicine did, since it was, at heart, based on the ...

This pivot was, in many ways, a good thing: it increased survival rates from infectious diseases and gave us longer lives on average. But it had one particularly negative consequence: doctors began to question whether illnesses they could not readily measure on tests were real. They doubted the testimony of those with amorphous illnesses such as autoimmunity, ME/CFS, or fibromyalgia, for which there is not always an easy test, an identifiable cause, or an effective treatment.

Today, a doctor presented with a hard-to-identify disease will often shrug the patient off, and so patients who report lingering symptoms after an infection, for example, have long been ignored or dismissed when initial tests failed to turn up anything.

Yep

As Susan Block, a Harvard professor of psychiatry and medicine, and a pioneer of palliative care, told me, “The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.”

Indeed, many researchers I spoke with for this book hope that the race to understand long COVID will advance our understanding of other chronic conditions that follow infection, transforming medicine in the process. •

Ulcers, famously, were once thought of as a purely psychological phenomenon—caused by stress.

Then, in 1979, an Australian pathologist at the Royal Perth Hospital found something that surprised him: bacteria in the biopsies of stomach tissue taken from patients with digestive complaints. At the time, an indisputable tenet of medicine held that the stomach was a sterile environment—no bacteria lived inside it.

decade later, in 1993, The Wall Street Journal trumpeted, “Studies Confirm Most Ulcers Are Caused by a Bacterium, Curable by Antibiotics.”

Furthermore, in some people the bacterial infection went on to cause stomach cancer—showing that an infection could be a trigger for cancer. The

It now seems that while H. pylori does trigger ulcers, they can be compounded by stress, for reasons that are not well understood. More important, H. pylori doesn’t trigger ulcers in everyone. In fact, when researchers started testing for H. pylori, they found that it infects around two thirds of the world’s population, many of whom did not have ulcers.

One study found that H. pylori may even play a positive role in human health: adults without it in their stomachs are more likely to have suffered from asthma as children. But

In the meantime, modern medicine’s stigmatization of patients who lack clear-cut test results continues to be a chief shortcoming of the American health care system, which, in its understandable embrace of authoritative answers, struggles to acknowledge what it does not know.

found myself wondering how many people today are suffering unrecognized and largely alone because modern medicine is bad at acknowledging “how liddle” it knows. I felt a prickle at the special horror of being not only ill but also marginalized—your testimony dismissed because your lab work fails to match a preexisting pattern.

One of the hardest things about being ill with a poorly understood disease is that most people find what you’re going through incomprehensible—if they even believe you are going through it.

“Pain is always new to the sufferer, but loses its originality for those around him,” Alphonse Daudet observes in In the Land of Pain. “Everyone will get used to it except me.”

Worrying that your symptoms are psychosomatic—or even imagined—is part of life for many people with poorly understood illnesses.

It wasn’t just that I suffered brain fog; it wasn’t just the loss of self that sociologists talk about in connection with chronic illness, in which everything you know about yourself disappears and you have to build a different life.

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. “Farewell me, cherished me, now so hazy, so indistinct,”

Some days, the pain tipped from manageable to consuming, as if my brain had been caught in an unexpected electrical storm.

Attempting to reduce pain that was context dependent to a number just made it clear that there was no way to make this invisible symptom legible to others.