The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

When I got acutely sick in 2012, such illnesses were poorly studied and rarely discussed—and often seen as manifestations of underlying mental illness.

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.

Today, we like to believe that we are rational about disease and immune to this kind of metaphorical thinking. But research shows that medicine is still riddled with such views, particularly when it comes to hard-to-identify illnesses, which are often seen as symptoms of some deeper psychological or existential problem. While advances in our understanding of mental illness constitute one of the great successes of twentieth-century medicine, patients with poorly understood illnesses confront an often reflexive categorization of their physical symptoms as mental ones—which presents a barrier to proper care and research.

(Much of what I discuss here could be applied, say, to the experience of patients with chronic pain or migraines,

But this is not a story of recovery or the overcoming of a disease; the focus is not on my being a survivor, or getting “better,” as it is in so many illness narratives. To the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity.

a story about letting go of the American ethos of overcoming and about confronting our mutual interdependence.

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.

She did an exam and ultrasound. “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.” She gave me some tissues and I wiped myself, dressed, and left, puzzled by the way my pain had been relegated to a sign that my fertility might be compromised, not a problem in its own right.

they tend to cluster in families, and many people end up with more than one such disease. But it is also clear that environment plays a major role: 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.

Patients often end up consulting different specialists for different symptoms, with no one taking a big-picture look at the patient’s illness, unless a primary care doctor has the time to puzzle it out.

One woman I interviewed told me she was referred, over time, to a dermatologist, an endocrinologist, an immunologist, and a neurologist. She felt that each doctor she saw was just checking “his organ” off the list before telling her it wasn’t the cause of her symptoms and sending her on her way.

As it is, many clinicians assume that the patient, who is often a young woman, is simply one of the “worried well”: people who visit doctors for rea...

In the meantime, our apartment had become my world, and I turned a consequently oversized attention to it, fussing with pillows, rearranging a bookshelf if I felt up to it, spending hours in bed browsing design sites. On other days I spent hours in bed looking at clothes. At the time this made me feel like a fraud. If I could window-shop on the internet, surely I could summon up the willpower to be writing, to be reading. Instead, I’d become someone without an inner life. These hours of aspirational longing, I now more forgivingly think, were a response to the illness. I was trying to manifest the person I wanted to be: a person who could enjoy her life, her home, a person who wasn’t about to die or disappear. The part of me that spent hours looking at home design sites and clothing on sale was the part of me that wanted to live and didn’t know how else to express it. The worse I felt, the less I could do what I wanted (work, think), the more I searched for beauty and for pleasure.

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.”

to denote the weight of the wear and tear on a body as it tries to retain equilibrium in a taxing and stressful world. The lower an individual’s allostatic load, the easier it is for that person’s body to stay healthy. The higher it is—because the person lives in a polluted area, has an infection, suffers food insecurity, or lives with a chronic stressor such as systemic racism—the likelier you are to get sick with various diseases.

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.

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.

In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “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.”

The patient has to hold in mind two contradictory modes, in other words: insistence on the reality of the disease and resistance to her own catastrophic fears. I found it hard, in the fall and winter of 2012, to strike that balance. I was increasingly worried. After all, a terrible anxiety attends chronic illness. Over time, it becomes difficult to untangle the suffering from symptoms like pain from the suffering inflicted by the anxiety over the possibility of more pain, and worse outcomes, in the future. This does not mean that the illness is in the mind; rather, the mind—that machine for making meaning—makes endless meanings of its new state, which may themselves influence the experience. It was in this recursive hall of mirrors, trying to adjust to my body’s ailments, that I lived.

It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.

“Farewell me, cherished me, now so hazy, so indistinct,” Daudet writes—a line I now often thought of.

In those months I was lonely in a way I never had been before.

By 2012, when I came to understand I was sick, pain was only one of my symptoms, and not even the worst. But its constancy was wearing. It moved around my body, changing from day to day,

How to describe intermittent severe pain on the same scale as constant middle-range pain, which I found more debilitating? 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. And the poet in me found all the metaphors for pain to be limited. “Burning,” “tingling,” “stabbing”—these words did little to describe pain’s reality, which ebbed and flowed according to its own logic. Pain was an empire of its own, well defended against language’s forays against it.

At times I thought I would slowly slip away unseen and no one would notice because the shell of my body was still there.

This was why I wanted others to see what was happening to me, to know that I was locked away in the room alone. If they knew, perhaps someone could find a way to get me out. Instead, I feared, I would be relegated to a world of the imaginary ill, exiled to an invisible kingdom from which I would never be allowed passage.

When I later asked Jack Cochran, the former executive director of the Permanente Federation, what happens to patients who don’t have the energy or the means to persevere in connecting their disconnected doctors, he said, “They fall through the cracks, and they suffer in their own world, alone.”

“Any patient in a hospital, when we take their clothes away and lay them in a bed, starts to lose identity; after a few days, they all start to merge into a single passive body,” writes Terrence Holt, a geriatric specialist at the University of North Carolina at Chapel Hill.

I grew practiced in choosing only a few symptoms to tell my doctors about, and I didn’t mention the many other doctors I had seen: physicians often assume patients who “doctor shop” are problem patients. I also quickly learned one of the worst things I could do was to show up prepared with prior medical records.

health care in the United States operates predominantly on a fee-for-service basis, which rewards doctors for doing as many procedures and ordering as many tests as possible rather than for offering the best care possible.

My endocrinologist

The bureaucracy frustrates doctors and patients both. And it places an added burden on those for whom the costs and complexities of navigating a fragmented system are a barrier to access. Given these systemic realities, it comes as no surprise that health care outcomes in the United States correlate to income levels. “The greater one’s income, the lower one’s likelihood of disease and premature death,” a 2015 report on health care equity

One of the underacknowledged facts of being ill is how difficult and saddening the encounters with the medical system can be. The situation is so extreme—the impasse so obvious—that at Davos in 2014, Mark Bertolini, the CEO of Aetna, speaking of his own experiences guiding his sixteen-year-old son through the health care system, exclaimed, “The patient really isn’t a person.

I had gone in hoping for help. Instead, the doctor had shrugged when I asked if he could help me: “We’re all tired, Meghan.”

Arthur Frank, a medical sociologist, points out that the ill are busy trying to formulate a story to help them navigate their new identity. Being ill, after all, is unwelcome, foreign, confusing. It interrupts your plans for the present and, when you are chronically ill, for your future.

My mother, when she had colorectal cancer, was said by a doctor to have “failed” chemotherapy when her disease progressed. Wasn’t it the other way around?

My migraine treatments

Research like Kaptchuk’s underscores the material and corporeal reality of Frank’s point: the body is a site of social encounter, not a vessel for American hyperindividualism.

Our nostalgia—be it for “natural” immunity resulting from contracting an infection, or for the nourishment of raw milk, or just for the purity of preindustrial life—leaves out of its vision the high death rate from infections, the dirty water that spread typhoid, the rancid unpasteurized milk that sometimes killed babies, and the basic struggle to survive. It leaves out our longer lives and our lower rates of infant and maternal mortality. Americans’ embrace of the “natural approach” is a rebuke to the dominant social structures of our time—Big Pharma, Big Medicine, Big Tech. But 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. This was a delusion I was still entirely in the grips of. There was a spiritual aspect to my performance of self-care. I was trying, through ritual, to heal my broken life, to find continuity again.

While I had great faith in science, I had begun to see that I stood at the edge of what medicine knew, and that medicine, given its own conservative, data-driven, evidence-based approach, had run out of things to offer me. I needed something else: I needed help getting through my day, and help figuring out why I felt better on some days than on others. Alternative and functional medicine’s attention to nutrition and sleep and improving my health around the edges had a great deal to offer me, even if it was just the alleviation or improvement of my worst symptoms, or a few more days of energy and focus. “I need a disease detective,” I told Jim one night,

Here in a nutshell was the difference: one system looks for small variations from a pattern and aims to remedy them with herbs and lifestyle management that (it says) will prevent more serious disease, the other looks for an extreme deviation in adrenal hormone levels that manifests in profound illness, and treats it with powerful steroids, but regards minor deviations as outside its purview. Where the evidence stops, the doctors’ hands are tied. Or rather, when you live outside the boundaries of known pathology, conventional medicine hesitates to intervene.

Were they real cause for alarm, or were my integrative doctors looking for problems, as a friend of mine worried they were, to charge me hundreds of dollars for supplements? The latter question would have concerned me more if I had felt great and these practitioners were telling me I was sick. But I felt as though I might be dying.

Indeed, in 2016 the BMJ estimated that medical errors were the third leading cause of death in the United States.

The next day, my friend Gina asked me how I was. We were sitting with organic pour-overs at the kind of Brooklyn place that sells Paleo-friendly almond-flour muffins. I recited the latest details (my thyroid antibodies were suddenly higher than ever, and what was with the maddening itching along my legs?) and then stopped. I sounded, I realized, like every other health-obsessed narcissist. My search for clinical illumination had grown claustrophobic. I had a diagnosis—Hashimoto’s disease—but now it also seemed to have me. “I’m OK,” I said. “I’m actually OK,” hoping it was true.

You cannot muscle your way to health when you are chronically ill. Rather, one way of coming to terms with an amorphous systemic disease is recognizing that you are sick, that the illness will come and go, and that it is not the kind of illness you can conquer.

And my god, the need. It felt shameful to need other people so much. I needed practical help, often, including financial assistance paying my doctors. But I also needed—or thought I needed—recognition of what I was going through.

People whose illness has no name get little sympathy. News of a friend or family member’s fresh diagnosis often brings with it what the poet Christian Wiman calls “that little shiver of pleasure-horror” which, as he puts it, is your self realizing, “I’m going to die!” But when the terms of your disease are unclear even to doctors, that pain-shiver doesn’t come. The people around you might feel the loosest kind of tremble within. But the tremble quickly settles into disbelief rather than the “promiscuous sympathy” Wiman experienced as a young person diagnosed with cancer.

In dark moments I continued to wonder if the wrongness was me. Perhaps it was a problem of character that made me feel this way. I didn’t believe this to be true, but I had no explanations for my symptoms and little corroboration in my lab work. I still wonder if patients with a well-understood disease feel this way. Are these questions particular to—and intensified by—uncertainty, or are they a feature of any ongoing experience of ill health? Or both?

Medicine treats women differently from the way it treats men, as Barbara Ehrenreich and Deirdre English show in For Her Own Good: Two Centuries of the Experts’ Advice to Women, and gender has real implications for medical care—mostly negative ones, if you’re a woman.

In 2001, the Institute of Medicine published a report called Exploring the Biological Contributions to Human Health—Does Sex Matter? “It matters,” the report concluded, “in ways that we did not expect. Undoubtedly, it also matters in ways that we have not begun to imagine.” But little changed. The result is a profound lack of knowledge. As recently as 2014, Dr. Janine Austin Clayton, the associate director for women’s health research at the NIH, told The New York Times, “We literally know less about every aspect of female biology compared to male biology.”

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. You can guess what happens, then, when doctors cannot identify the source of the symptoms.

It is also what the philosopher Jill Stauffer calls “ethical loneliness” in her book of the same title, about what she calls the “injustice of not being heard.” Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged. The term speaks to the special pain of being part of a silenced group, and the pain you feel when the possibility of communication disappears simply because of your identity. The loneliness is profound.