The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

“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. Although the experience of illness is not just in the head, it is also not just in the body. The person enduring such an illness faces a difficult balancing act. On the one hand, she must advocate for herself, even when doctors are indifferent or ignorant, and not be deterred when she knows something is wrong. On the other, she also must be willing to ask whether an obsessive attention to symptoms is going to lead to better health. 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.

My mother and I were among the luckier ones, as relatively privileged white women. My mother received prompt, attentive care (though male doctors often felt a need to comment patronizingly on her weight to me, as if I would share their sentiments).

Overt racism and unconscious bias toward people of color, women, and transgender patients is rampant in some hospitals and practices, where health care workers—according to many doctors’ own accounts—routinely refer, to choose just two well-documented examples, to obese people as “beached whales” or to Latinx patients as having “Hispanic hysterical syndrome.”

For example, although I had grown up hiking and camping in the Northeast, for years no doctor asked if I had been tested for Lyme disease or other tick-borne illnesses. None except for Dr. E tried to ascertain if there was a history of autoimmune disease in my family.

“To speak our life as we feel it is a freedom we mostly choose not to take,” the writer Deborah Levy notes.

Now, when I needed to exercise this freedom, I couldn’t figure out how to do so, so accustomed—acculturated—was I to taking my cues from what others wanted to hear. Often my physicians interrupted me just as I’d begun to talk. (Doctors tend to interrupt patients after eleven seconds of speech.)

For this is the strange thing about a vulnerability that remains unseen by others, an illness that is unacknowledged by society. It is the sick person whose worldview warps, the wounded one who absorbs the idea that the most indelible aspect of her present condition is in fact a defect, a distortion of her own making.

The problem isn’t doctors so much as the system, in short. Today, the typical medical appointment is fifteen minutes long, which is not enough time for patients with a complex condition to go over symptoms and ask questions, or for a doctor to coach a patient through lifestyle changes. The short appointments have a history: rising costs in the 1970s were the catalyst for “managed care”—basically, our current system, in which insurance companies like Aetna and UnitedHealthcare negotiate with networks of doctors to determine how much care patients get, whom we can see, for how long, and at what price.

To rein in costs, insurance companies have set fees lower and lower, and doctors work faster and faster, especially when they are in large medical networks that require them to cram in a set number of visits per day. Compounding all these issues, health care is divided into silos, with each specialist operating individually, keeping their own records, and referring patients who need to see other specialists to their own favored doctors. The model works especially poorly for autoimmunity and other chronic illnesses: no one is in charge of coordinating care.

Silos fail to support “the whole patient,” an editorial from the Foundation of the American College of Healthcare Executives notes; there are communication gaps. “Deep silo–based specialists don’t always work well together,” Jack Cochran tol...

It is difficult to be a patient for long without coming up against the hard truth that what you are searching for and what your doctor is offering are two entirely different things.

Being heard by your doctor isn’t just an emotional need but a physical one: patients benefit clinically from feeling cared for.

In 2015, I met with Cochran, and I asked him why it was that doctors so often dismissed patients with vague symptoms. “The reason is this—you’re coming to me, and my stock-in-trade is expertise. You’re coming to me because I have this brain full of stuff that you need. But if my brain can’t do what it needs to do, then I’m a fraud, or a flawed doctor, or inadequate, or stupid, and that ain’t easy on me, because I’ve always made A’s in chemistry, I’ve always passed my boards, I’ve always been high on the food chain of knowledge acquisition and management. It doesn’t feel good to me, to be mortal. I’m failing you—I’m a failure.”

the body is a site of social encounter, not a vessel for American hyperindividualism.

During our conversation, I asked Susan Block if it was reasonable for chronically ill patients to want an emotionally supportive relationship with their doctors. “Absolutely,” she said. “If we can’t do that, we really are practicing only half of what medicine is and can be.”

sailboats on the wall and greasily

“What the language of alternative medicine understands is that when we feel bad we want something unambiguously good,” the writer Eula Biss aptly notes in On Immunity: An Inoculation.

what was at the cutting edge from what was known to be false. But as more

In 2019, a study of patients at a clinic in Iran found that “laughter yoga”—gentle yoga that includes laughing—was more effective than anti-anxiety medication in controlling symptoms of irritable bowel syndrome, which are worsened by stress.

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.

“The knowledge that you’re ill is one of the momentous experiences in life,” Anatole Broyard wrote, speaking of being “galvanized” by his diagnosis of prostate cancer in Intoxicated by My Illness. Susan Sontag told The New York Times that her cancer diagnosis had “added a fierce intensity to my life, and that’s been pleasurable.” But there was nothing galvanizing or fiercely intense about my experience. It was more like a soul going limp, a steady drain of energy and of will.

One of the punitive fantasies—to borrow Susan Sontag’s phrasing—society has long held about women who are ill is that their unwellness is mainly in their heads.

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.

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.”

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.

As Harrington notes, after Freud, a patient was no longer “the best judge of what was going on with her body” and “should not necessarily be allowed the last word.”

My life as a patient changed the day I reread a letter by the nineteenth-century poet John Keats in which he offers a theory of what makes an artist great. At the time of its writing, Keats had witnessed his mother die from tuberculosis, then a poorly understood disease with an unclear cause. Soon his brother Tom and later he himself would die of the infection. In the letter, Keats—in his early twenties—tried to explain to his brothers the special quality that differentiated a great artist from a merely good one. “Negative Capability,” as he termed it, is the quality “of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason.” I couldn’t escape the sense that Keats’s words about the necessity of “being in uncertainties” derived from his own experience of living with consumption’s impact on his family. In fact, his formulation of negative capability seemed to be a key to living well in the face of pain.

It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to be alive is to be in uncertainty.) I was grateful for his words, because they reminded me that I wasn’t living off the known map of human experience. Rather, I had felt invisible in my illness, I realized, because American culture—and American medicine within it—largely strives to downplay the fact that we still know so little about illness.

There is one certainty for those of us at the edge of medical knowledge, though: we live in the gap together. As Keats witnessed more and more suffering—his brother Tom’s death and the infectious illnesses sweeping London—he connected his aesthetic vision to lived experience. The world, he wrote in a letter, is “the vale of Soul-making”: “Do you not see how necessary a World of Pains and troubles is to school an Intelligence and make it a soul?” Certainly, none of us would choose to suffer. But when we do suffer, we can hope that others acknowledge with us that we live without all the answers. When

In this sense, we are misled by metaphor into seeing personal significance where there may be merely accident—or, indeed, systemic causes.

It is, in a way, irrational to view the immunological consequence of contracting a virus at a stressful time or your body’s reaction to autogenic chemicals at the dry cleaner’s you live above as a profound comment about your identity.

While this confusion has roots in immunology’s early vocabulary of selfhood, the idea that disease is a physical expression of a metaphysical condition is not new. It is deeply embedded in Western Judeo-Christian thinking, going back at least to the Christian notion that illness is entangled with sin: “Confess your faults one to another, and pray for one another, that ye may be healed,” we read in James 5:16. 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. In the twentieth century, Freud and his descendants updated this framework by psychologizing illness: the body’s symptoms were now not a sign of sin but a sign of taboo or repressed emotions. Still a metaphor. What is new is that today, in our secular, individualistic nation, an amorphous illness is seen inevitably as an opportunity to uncover the authentic nature of the self and improve it, a project squarely in line with other obsessions of our neoliberal society. The focus on personal realization obscures the fact that it is not our selves that are wrong but the very structure of our society, with its failing support systems, its poor chemical regulation, its food deserts, its patchwork health care delivery.

In fact, the idea of autoimmunity as the expression of a conflicted self could be said to serve a purpose that reinforces the societal status quo more than it elucidates biology. First, it gives the patients a story they can focus on and attempt to exert control over. It gives biographical meaning to the disease that otherwise is being described in clinical terms in fifteen-minute appointments by a physician with whom, most likely, the patient has almost no relationship. Instead, the patients tell themselves a story that, painful though it might be, offers them a modicum of control—and the promise of both biological and spiritual healing.

Then, too, there is the fact—not documented in the medical literature but true of every sick person I have known—that illness causes a sense of apprehension that, before it is recognized as disease, seems psychological, setting the stage for some identification of the mind and body.

Then she explained that with a disease like mine, which ebbs and flares, “if some days are fine, I would ask people first, what is the difference between days you are fine and days you are not fine? If you sometimes feel good, it means you don’t have the disease all the time. Why is that, and how can you get to inhabit that ‘not all the time’ more frequently?”

the consequences of so-called negative labeling: evidence shows that when you give patients a diagnosis, they tend to feel sicker or more vulnerable than they did without one.

“The flip side of positivity is . . . a harsh insistence on personal responsibility.” So says Barbara Ehrenreich in Bright-Sided: How Positive Thinking Is Undermining America.

craved a more nuanced discourse of the mind and the body: after all, the idea that thoughts could influence body and body could influence thought hardly seems surprising. The problem is that so many patients’ ailments have been reduced to one or the other as a way of shutting down inquiry.

To have the dignity of one’s reality: this, I realized, was why I worked so hard to find language to tell my story.

wanted to show how the emphasis on the psychological nature of chronic illness in a culture that pathologizes the failure to “overcome” robbed people of grace, while instr...

I was not entirely surprised years later to find, rereading Styron’s book, how similar were the experience of major depression and the inchoate suffering I underwent.

I wanted to know why, in his view of human character, it appears to be difficult for doctors (and the rest of us) to recognize suffering that we cannot name—why we are so quick to think a person is exaggerating or faking it? What is behind this refusal to recognize suffering?

“Even if doctors don’t know what to do,” I said, “and even if the lab tests are inconclusive, why not accept the testimony of the patient? Why do we have a system that’s so quick to distrust the very people it serves?” “Well,” he said, “recognizing your suffering puts a burden on me.”

“Just the act of recognizing you are ill makes a claim on me, doesn’t it? I have to respond. I have to empathize. And that takes a toll on me. And the more people I have to empathize with, the harder it is.

Susan Block, the Harvard palliative care pioneer, pointed out that in many places, communication-skills training in medicine is “primitive.” But there are successes. Recent advances in geriatric medicine and palliative care embody what can happen when the U.S. medical system shifts from high-tech intervention (which can bring its own problems) to helping patients live with their condition. Geriatric and palliative care doctors are trained to elicit patients’ own attitudes about what matters most to them. Medical schools are also trying to reform medicine’s longstanding habit of patient blaming. Some—not enough, Block implied—are putting more effort into teaching students key communication skills.

“A lot of clinicians want the algorithm,” Putrino said. “There is no algorithm. There is listening to your patient, identifying symptoms, finding a way to measure the severity of the symptoms, applying interventions to them, and then seeing if those symptoms resolve. That is the way that medicine should be.”

Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.

The more I talked to sick people, the more I found that what is most disturbing for many of us is that grace has become a kind of moral requirement in sickness: If you must be ill, at least be improved by your illness.

Then, too, the United States does not treat health care as a human right or sick people with dignity.