The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

After I reached my sickest, I dreaded waking, because my symptoms were always worse in the morning, and because I knew the day would be full of suffering without explanation.

the COVID-19 pandemic has given us a keen sense of how variable the human response to infection can be, vividly dramatizing the ways that a virus or bacterium (or multiple viruses and bacteria) can collide with an individual’s biology to unleash a host of perplexing aftereffects in the body, often incited by the individual’s immune system. The scope of the problem of COVID-19 long haulers has begun to bring more attention to these chronic syndromes.

Doctors once thought of multiple sclerosis as a form of hysteria. Tuberculosis (or consumption, as it was originally called) was viewed, until scientists discovered the bacterium that causes it, as a disease that afflicted romantic young souls. For decades, certain forms of cancer were thought to be a consequence of repressed emotions.

this book is about living with, rather than eradicating or defeating, a disease: a story about letting go of the American ethos of overcoming and about confronting our mutual interdependence.

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).

For reasons that are still not well understood, approximately 80 percent of autoimmune patients are women, though a handful of autoimmune diseases overwhelmingly affect men.

many clinicians assume that the patient, who is often a young woman, is simply one of the “worried well”: people who visit doctors for reassurance that nothing is wrong with them.

“Inflammation” is a word that gets thrown around a lot. Generally speaking, it describes what happens when immune cells detect a problem and release something known as “inflammatory mediators,” which cause blood cells and immune cells to rush, say, to a wound. This process can produce pain, irritate nerves, and damage tissues. While acute inflammation is useful in helping heal wounds and fight infections, chronic inflammation is harmful to the body and has been associated with a higher risk of cancer and stroke, among other issues.

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.

him who waits, all things come! . . . Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have.” Anyone who has suffered from an unnamed illness can understand the perversity of the logic.

in a crucial way it is also in thrall to one of the most powerful contemporary Western delusions: namely, the idea that we can control the outcomes of our lives, in this case through self-purification.

as any poet knows, good and bad metaphors shape reality for better or for ill. In this case, when deployed well, alternative medicine may be such a good metaphor it literally changes the physiology of patients: healing as metaphor.

Of the nearly one hundred women I interviewed, all of whom were eventually diagnosed with an autoimmune disease or another concrete illness, more than 90 percent had been encouraged to seek treatment for anxiety or depression by doctors who told them nothing physical was wrong with them.

Estimates suggest that as many as one in four women will develop an autoimmune disease; a rational doctor, presented with a patient who feels unwell and has a family history of autoimmunity, ought to think, This might be one of those patients.

The central issue is that physicians tend not to see women’s self-reports of illness symptoms as valid. When a female patient complains of pain or discomfort, her testimony is viewed as a gendered expression of a subjective emotional issue rather than a reflection of a “hard” objective physiological reality. Even when it comes to a disease as grave as cancer, a woman’s testimony about what she is experiencing is seen as an exaggeration.

Since the 1950s, the prevalence of autoimmune diseases has risen in developed Western countries while rates of infectious disease (before COVID, at least) have been declining, thanks to vaccines, antibiotics, improved hygiene, and increased wealth.

“genetics are the gun; a virus pulls the trigger.”

Christianity saw illness as a sign of spiritual taint—a metaphor for sin. In the Gospel, the sick are healed when they accept faith. Our word “pain” is from the Latin poena, or “penalty,” later the Old French peine, or “suffering,” as punishment.

the human body responds to anticipated and imagined stress as if it is lived stress. This capacity for imagining and anticipating makes stress damaging. Our subconscious takes our conscious fears seriously, and adjusts our biology accordingly.

the American affection for positive thinking reflects a desire for illness stories to have neat resolutions and uplifting moral outcomes.

it’s one thing to have these symptoms for a day, or even a week. Suffered daily, they take on a meaning beyond the pain, like being shadowed by a specter. You have a feeling something in your body is trying to defeat you, that something inside you wants you dead.

I understand the language of illness more intimately than do many of the researchers who study disease; I am a native speaker, you might say. For me and others who have been seriously ill, the idea that we could confuse these symptoms with the normal aches and pains of life is laughable.

In the absence of certainty, medical science remains unsure what story to tell. Too often it turns away from patients rather than listening to the long and chaotic stories we tell, narratives that start and stop and double back,

As much as we want silence, we also work hard to blot it out. Adrift in noise and bustle, we duck confrontation with the metaphysical and the existential. We avoid the enduring regret at how we treated an old, estranged friend, the fear that our life has been a project of self-delusion—that its gilded hand-stitched brocade may in fact be moth-eaten.