The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

She told me, “I don’t really understand how so many doctors could think that I was making up my symptoms—did I have nothing better to do in my life than make things up? Not that they didn’t do some research, but they didn’t look deeper into the problem!” She added, “Unfortunately, anxiety is high up on their list of considerations. They check one or two things and if they don’t find anything, it’s anxiety.

Diana found it plausible that an emotional state like anxiety could make a person feel sick. But she found it hard to believe that anxiety could be an “all-encompassing, completely debilitating, can’t-get-out-of-bed-for-months” problem. She paused. “Anxiety should be the very last thing they come to, after they check out every single other thing.”

By the thirteenth century, some religious scholars saw symptoms that would later be labeled “hysteria” as a specifically female ailment caused by the devil. As one scholar puts it, “if a physician cannot identify the cause of a disease, it means that it is procured by the Devil.”

It was thought that “brain work” could literally drain energy from the uterus, making women weak and fatigued. And so many doctors drew a connection between the “epidemic” of hysteria and the rise of suffragism and women’s intellectual exertions. (Among the women to receive a diagnosis of hysteria were the writers Charlotte Perkins Gilman and Alice James.)

“We are always only partly human,” Proal said. Those organisms release chemical by-products that can affect many aspects of what we take to be our “self,” from mood to physical well-being.

Epigenetics, though, does not refer to changes in the DNA code but to changes that can turn a gene “on” or “off.” And these changes, it turns out, can be passed from generation to generation. Epigenetics helps determine outcomes through biological processes that impact the way proteins access or “read” a gene. Smoking, working night shifts, infections, stress, famine—all have been shown to cause epigenetic changes in the body, some of which can be passed on.

As Bernie S. Siegel, a surgeon who taught at the Yale School of Medicine, wrote in his best-selling Love, Medicine, and Miracles (1986), “There are no incurable diseases, only incurable people.” It’s no coincidence, then, that much of the nation responded to the novel coronavirus along these lines, with many Americans suggesting that those who were at risk—the elderly and people with certain underlying conditions—should just stay home so the rest of America could skip wearing masks, even though such a strategy would have ended up killing even more people than the virus already had.

One day, as I sat beside her on the couch where she rested, she opened her warm brown eyes and said, in a brief moment of clarity, “I just don’t want you to spend your life going from hill to hill, Meg. There are other ways to live.” She died at the age of fifty-five on Christmas Day 2008; the next morning I ended up in urgent care with a sinus infection. “Poor thing,” the clinic doctor in Fairfield said, after examining my ears and nose. “You’ve let this get really severe. But the antibiotics will clear it up. Get some rest.” I took a course of antibiotics, I rested, and I never got better. It is hard to know what happened when, because for so long I wasn’t sure that I was sick. Sometimes I wonder, had I always been sick, since I was a child with aching knees and bouts of exhaustion? Or had I not been sick at all until my family rented a house after my college graduation, close to Lyme, Connecticut, after which my neurological symptoms began? Was life perhaps just a long chronic illness, as a prominent feminist historian would later ask me after I gave a talk about chronic illness—an implication being that it was my identification with my illness that made me “ill”? (Alexander Pope: “This long disease, my life.” But Pope, historians think, lived with Pott’s disease, or tuberculosis of the spine, from childhood on.)

The illness responded to stress, but at the same time the illness was a state of perpetual stress, weighing on me like a boulder. Which is one reason people hunger for a clear diagnosis.

The weathering hypothesis theorizes that African American women have more illness in early adulthood as a result of the constant stress of systemic racism and, for some, the challenges of facing socioeconomic disadvantages. Further research suggests that socioeconomic disadvantages and structural insecurity lead to telomere shortening—a key measure of aging—and a higher allostatic load (wear and tear caused by stress). While conservatives like to put the focus for health on individual responsibility and “lifestyle,” a term they use as a weapon, Geronimus’s research reminds us of the social, interconnected nature of our bodies and our health, and the way that racism exacts debilitating vigilance from Black bodies. That vigilance has an invisible physical cost. The calamity here is not one of personal failure but of societal failure: the conditions of insecurity that systemic racism not only perpetuates but actively fosters. The state of a person’s immune system is, among other things, a reflection of that person’s socioeconomic status and their history as a citizen of a flawed polis,

The latest wave of belief in positive thinking dates to the 1970s, when a handful of studies suggested that positive thinking was beneficial to the resilience of cancer patients. People began to assume that “healing ties” or having a “fighting spirit” were determinants of cancer outcomes. In a landmark study, the Stanford psychiatrist David Spiegel found that women with metastatic breast cancer who had gotten support from group sessions had “lower mood-disturbance . . . and were less phobic.” They also appeared to live longer than the women in the control group—twice as long on average, or 36.6 months compared to 18.9 months.

Positive thinking in the face of illness purports to give us back a modicum of control. It suggests coherence in a chaotic world. It makes willpower and mindset meaningful again—even though willpower is one of the things that disease can prove to be a false (or at least overdetermined) construct. No wonder so many Americans still believe that positive thinking has a role to play in health. I, too, wished that it could lift me from my morass of sickness, even as I instinctively distrusted our cultural embrace of it: the American affection for positive thinking reflects a desire for illness stories to have neat resolutions and uplifting moral outcomes.

In the aftermath of Spiegel’s finding, numerous studies, including a follow-up he conducted in 2007, have failed to replicate his results or show a connection between optimism and disease outcomes in cancer. In one of the most rigorous, James Coyne, a professor of psychology at the University of Pennsylvania, studied nearly eleven hundred people with cancer and found no correlation among optimism, positive thinking, and cancer survival rates. Since then, most studies have suggested that positive thinking does not lead to better outcomes with breast cancer.

A mental association was weakening the rats’ immune system even though they were no longer receiving the actual immune-dampening drug itself. In the paper describing their work, Ader and Cohen concluded that “there may be an intimate and virtually unexplored relationship between the central nervous system and immunologic processes.”

I asked her about my case, explaining that how I felt changed day by day. First, she graciously acknowledged the reality of my symptoms. 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?”

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

I 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 instructing them to suffer their illness with grace.

Exhaustion consumed my body. The fatigue was itself fatiguing. I woke early every morning in pain, unable to go back to sleep. Before I opened my eyes, I did a kind of mental check to see if the pain was there. It is hard to describe without using the usual words: I had a headache, achiness, flu-like symptoms. But 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. One bright morning I woke and felt joy—the fog is not there!—only for it to jostle through me when I sat up.

For days on end, the bed was my landscape. It stretched around me like the plains. My mind was occupied with waiting until the pain and discomfort passed. I understood certain aspects of madness better, the nearly rote repetitions that come when meaning has faltered on the inside. Any outing—to teach my classes, mainly—meant days of recovery afterward. I got more blood work, more IV vitamin drips, and followed Dr. C’s protocols. I took steroids in case they might help with hidden autoimmune issues. I only got sicker. “Can’t this be over?” I whispered to my computer screen.

Some of Dr. C’s protocols—the phosphatidylcholine IV drip—briefly made me feel better. But the overall arc was downward. And yet I still resisted the idea that I might have late-stage Lyme. It might strain credulity that a person who believes she is dying doesn’t just try some antibiotics, especially after all the experimental treatments I had tried. But when I mind-tunnel back in time, I can briefly reinhabit how convinced I was that the autoimmune issues would only get worse if I took antibiotics—and how skeptical I was that I had Lyme disease.

But the fact that I felt like a ghost instead of merely feeling numb gave me a speck of hope. Ghosts haunt themselves into being.

Right on

A person without memory is a person without meaning.

Is that a fact?

But this rash, as terrible as it was, was nothing compared to what I had felt when I was at my most ill. The difference was that none of these symptoms could be seen. The illness was severe but invisible. And that invisibility made all the difference—it made me invisible, which itself almost killed me.

Her baby woke unexpectedly, and she picked him up and lifted him to her with a smile that pierced me. I wasn’t missing only life’s bacchanalian pleasures—the pleasure of tart raspberries and custard, the self-forgetfulness of a muscle-burning workout, the energetic sense of hurtling out the door, excited about a meeting—but its metaphysical ones. I had no children, and I wanted to be a mother. I once had ambition and yearned to write; now I only wanted the pain and fog to lift. I was, in some profound sense, interrupted and out of time, and it was this—the gray-wool hours through which I moved, the loss of a life as a mother, the loss of meaningful work—that pained me more than anything.

In this sense, PTLDS, autoimmunity, ME/CFS, and long COVID are diseases of our era, conditions that illuminate the need for a shift in medical thinking, from the model of the specific disease entity with a clear-cut solution to the messy reality shaped by both infection and genetics and our whole social history, a reality that no one yet fully understands. In the absence of certainty, medical science remains unsure what story to tell.

What does it mean for a chronically ill patient to heal? In some cases, it may mean a remission of disease. But in others, it means the patient is now able to manage the illness with some degree of integrity.

Integrity.

But sitting there I thought, too, about the fact that some kinds of healing can be so slow you barely notice them.

“The idea that physical space might contribute to healing does, it turns out, have a scientific basis,” Esther M. Sternberg notes in Healing Spaces: The Science of Place and Well-Being. A 1984 study, published in Science, found that when hospital rooms have windows with a view of something natural, patients heal more rapidly than they do without one: the environmental psychologist Roger Ulrich examined hospital records of forty-six patients who had gallbladder surgery between 1972 and 1981, and who had had different views out their window. One group had windows overlooking a grove of trees. The other group looked out at a brick wall. The patients overlooking the trees left the hospital almost a full day earlier than the other patients, and needed less pain medication.

My apartment

In the Middle Ages and Renaissance, too, homes of healing were often beautiful, such as the Hospices de Beaune, one of the most handsome buildings in the city of Beaune, France, which was built as a hospital for the indigent. In the nineteenth century, tuberculosis sanatoriums prioritized clean, dry air at high altitudes and lots of sunlight. Many nineteenth-century clinics and hospitals included a large solarium (from the Latin sol, “sun”), in which patients could sit and absorb sunlight as they healed.

At the start of the twentieth century, the sun was invited into hospitals; by the end of it, the sun had been pushed out of them. “By the late twentieth century, state-of-the-art hospitals were generally designed to accommodate state-of-the-art equipment,” Sternberg observes in Healing Spaces. “Often, the hospital’s physical space seemed meant to optimize care of the equipment rather than care of the patients.”

The World Health Organization’s definition of healing goes beyond the mere curing of disease. It defines health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” If we want to think about the ways medicine can do better, we will need to engage with this definition—especially when it comes to chronic illness.

“In palliative care, healing is thought of as a sense of wholeness. It is not being cured necessarily, but feeling whole.” A patient is healed, that is, not solely by steroids or antibiotics, but also by nature, thrilling conversation, touch, empathy—being made to feel whole, rather than distraught, as she exits doctors’ appointments.

proves my desire for palliative care not wholly insane plus life prior to chronic illness ends, a death, should be respected more and handled with grief mgmt

This uncertainty initially brings with it an almost unbearable sense of isolation: “As sickness is the greatest misery, so the greatest misery of sickness is solitude.”

Donne quote

And yet from the loneliness of his hospital bed, as he listened to funeral and wedding bells ring around him, he came to his famous insight about the spiritual connectedness of human experience: “No man is an island, entire of itself; every man is a piece of the continent, a part of the main. . . . Any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.”

Putrino had been working on a project for dysautonomia patients with Amy Kontorovich, a genetic cardiologist at Mount Sinai who studies the condition and has treated hundreds of patients with it. (After they met, Kontorovich ended up diagnosing and treating Putrino’s wife, who has a form of Ehlers-Danlos syndrome.) And so, as the team showed him the cases, Putrino told me, he felt a leap of recognition. “I looked at the symptoms and was like, ‘Oh my god.’ And I called Amy and said, ‘Help.’ ” Kontorovich recalls that as she learned about long COVID, she had a sinking feeling. “If this is something that happens to a lot of people, we’re in trouble,” she remembers thinking, “because most doctors don’t recognize dysautonomia as a real entity.”

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. 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.

My narrative is not a neat one. Which version of the story of my illness I tell depends on what month, what day, even what hour I do so, and whether my symptoms are in the background or the foreground. I am luckier than I thought I would be when I got acutely sick in 2012. After years of suffering, being treated for a tick-borne illness got me partly better, transforming me from a bedridden person who could not recall basic words like “spring” to a functioning and often energetic thirty-eight-year-old. I have recovered, and yet—though I try not to focus on it—I am still sick. I live with hypermobile Ehlers-Danlos syndrome, POTS, and autoimmune thyroiditis. I have on-going fatigue, brain fog, and neurological and connective tissue problems. They are mostly manageable. Sometimes they are not.

Now that I am somewhat better, I can tell you the truth: When I was at my sickest, my life was utterly compromised, and my very sense of self was gone. When I was less sick—and there were periods of relief in my illness—I could step back from the experience and take pleasure in the vividness of the blue sky from my bedroom window. But I will not repeat falsehoods; I will not say the wisdom and growth mean I wouldn’t have it any other way. I would have it the other way.

Frank identifies three kinds of illness stories: restitution narratives, chaos narratives, and quest narratives.

And so many sick people find themselves in Frank’s second kind of story, the chaos narrative. As Frank notes, “events are told as the storyteller experiences life: without sequence or discernable causality.”

Frank’s insights into our contemporary hunger for framing illness as a kind of quest reminded me of a passage from an essay on virtue by the philosopher Alasdair MacIntyre. It makes a simple point: what the quester thinks a quest is for is never what the quest is for.

A traditional medieval quest, MacIntyre argues, is not “a search for something already adequately characterized, as miners search for gold or geologists for oil.” Rather, it is through “encountering and coping with the various particular harms, dangers, temptations and distractions” that “the goal of the quest is finally to be understood.” The quest “is always an education . . . in self-knowledge.” It entails a journey that forces the quester to be present in ways he or she might prefer not to be, and it does not necessarily involve triumph—although some part of me had always thought it did. Rather, it involves discovery.

In retrospect I see that I was a bad reader from the start, in search of the easy ending, the solution. I read for what allowed me escape. I looked away from the bruises blooming in the body. I kept going back to the false goal of the quest.

Good and bad reading re narrativizing Chronic illness

As a sick person, I did not have that option. I had to become a new kind of reader. And as this reader I must acknowledge that not all stories are quests. For some people being ill remains so awful and so taxing that it brings nothing other than chaos.

As the poet Audre Lorde put it, of living with breast cancer, “My visions of a future I can create have been honed by the lessons of my limitations.”

But as Audre Lorde said, “I would lie if I did not also speak of loss.”

To be chronically ill is to be in a state of ever-present “camouflaged grieving,” as the historian Jennifer Stitt puts it. It was this ever-present grief I felt was being swept under the rug when my friend counseled me to see the good that had come of my illness. She wasn’t wrong that something had come of it—but her quick counsel negated the complexity of the quest.

Of this passage, the critic Ruth Yeazell bluntly notes, “Even as a mere formula of consolation, this is remarkably empty.” The “power of standing for what one was meant to stand for,” after all, is as Yeazell notes “a purely rhetorical force, an energy whose ends are wholly undefined.”

As soon as I started to feel a little better, grief rushed in. Only now, some years out, having had my two sons—watching them grow in good health—does the sorrow fully flood me. I feel a black hole for what I lost: nearly the entire decade of my thirties, which might otherwise have been the best decade of my life. So many possibilities and freedoms. And why? The pain and anger are still there, inside me: flashes of the old sense that I was—or am—gradually leaving my life before I wanted to.

To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need.