How the United States Fails the Chronically Ill

How the United States Fails the Chronically Ill

Out of Sight

Poet and critic Meghan O’Rourke charts her struggle with chronic illness.

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How do you describe a migraine? I’ve had them multiple times a month for over 20 years, and I’ve never succeeded. There’s no metaphor that works; it’s not “like your head’s on fire” or “like your head might explode.” None of the usual descriptors for pain will do for a migraine. It’s not exactly “throbbing” or “pounding” or “pulsating,” which are the words my migraine tracking app suggests. How do you convey what it’s like when breathing is painful, not in your lungs but because it involves a tiny movement of your head, so you lie in bed taking shallow, sharp sips of air until the lack of oxygen makes that hurt too? How can you explain that the pain in your head somehow is your nausea, like when you’re in a dream and you just know you’re actually a shoe without needing to see it? Without the right words, how could anyone understand?

Much about being a migraine sufferer is lonely enough without the added burden of feeling marooned on an island of incomprehension. You miss dinners and parties; you disappoint friends and family; you struggle at work or lose jobs entirely. All the while, you face baffled or skeptical interlocutors who don’t understand how bad a headache can really be, or why you might be fine one minute and rushing home the next, or what pepperoni could possibly have to do with a headache. Your best hope is that the person you’re dealing with gets migraines too, or is close with someone who does, because words here fail at their only task.

This experience is not unique to migraines. Chronic illnesses of all types—which may be disabling, or not, or only intermittently so—involve this kind of social isolation. Most people don’t have them, so most don’t get what they are. In this way, they are “invisible illnesses.” They have disabling symptoms that may not be outwardly apparent, but often even medical providers opt not to take them seriously without test results or physical markers to prove sickness. To be disbelieved or misunderstood is a burden on top of the illness itself; the task of educating others in your life is yet another job you didn’t sign up for, thrust upon you by life.

In The Invisible Kingdom: Reimagining Chronic Illness, the poet and critic Meghan O’Rourke takes the lonely journey of life as a sick person as her book’s subject. But O’Rourke is not content with simply explaining what it’s like to be ill, though she does that very well. Instead, she deftly weaves scientific explanations of autoimmune illnesses and the broader problems of American medicine into a personal narrative of her search for answers. The Invisible Kingdom is an illness memoir that becomes a detective story, as O’Rourke investigates the source of her symptoms: the mysterious rash that appeared while she was on a beach in Vietnam, the electric-shock sensations, the fatigue and brain fog. She faces the existential questions involved in having an unidentified illness while battling apathetic doctors, confused or unhelpful friends, and the impossible demands of having to work while being too sick to do so. Along the way, she learns that “above all,” what she wanted was a “recognition of the reality of my experience, a sense that others saw it, not least because human ingenuity might then be applied to the disease that had undone me, so that others might in the future suffer less than I did.”

O’Rourke’s book isn’t just a general plea for social acceptance. She wants the “medical system” to take her and other people with conditions like hers seriously and to remake its approach to chronic illness entirely. But as valuable as that would be, there is much more to the story of being chronically ill in America. Ultimately, what makes America sick isn’t the psychic damage of being disbelieved. It’s the stakes of being disbelieved in a society without a real safety net, entirely predicated on ability to work—and the fact that even if you are believed, you might fall through the cracks anyway.

The Invisible Kingdom charts O’Rourke’s battle against chronic illness—in her case, Lyme disease, plus endometriosis, a number of autoimmune diseases, and POTS, which causes dizziness upon standing—over most of her adult life. Though she had been “intermittently unwell” since college, her story really begins when she became “acutely sick” in 2012, starting with that strange rash. O’Rourke then bounced from doctor to doctor, with the suspected culprit behind her condition changing all the time. Part of her problem, it became clear, was that there was no one cause for all her issues, and American medicine was poorly suited to diagnose such a situation. Fee-for-service health care, which rewards doctors for getting patients in and out quickly and with a clear diagnosis—not least because their reimbursement is dependent on accurate medical coding—and the siloing of specialists away from primary care are only two of the problems that American health care’s uniquely byzantine structure can introduce to the treatment of chronic illness.

O’Rourke began to find more of what she wanted in integrative medicine, in which doctors with medical degrees use non-Western treatments, such as acupuncture and herbs, for all manner of illnesses and symptoms, though perhaps most importantly the ones that conventional doctors struggle to identify. These practitioners would give her the time and attention that other doctors couldn’t or wouldn’t provide, in part because they didn’t take insurance. (It’s also a business decision; they’re offering something people want but can’t get from regular doctors, the way Burger King offers onion rings because McDonald’s doesn’t.) What she did not find with these doctors, however, was a cure. Her debt grew to over $22,000 in one year and then continued to pile up as she saw more of both sorts of doctors and tried an endless number of treatments. Yet she failed to feel better despite embarking on painfully limited diets that included spirulina, green juices, “a few hundred dollars’ worth of supplements,” and a “five-dollar grapefruit” from a bougie grocery store during a stint in Los Angeles.

Eventually, as O’Rourke’s condition worsened, she began to consider Lyme disease as a possible explanation. She had spent summers as a child in Cape Cod, an area rife with Lyme-bearing ticks. Her previous doctors hadn’t considered it seriously, and neither had she, since she had tested negative for it. Finally, one doctor presented her with results that she believed indicated Lyme disease—an interpretation that, crucially, other doctors may not have agreed with. Pursuing Lyme as a diagnosis, O’Rourke felt, was “a risky path,” partly because long-term Lyme and its treatments are quite controversial in medicine. She kept at the treatments that her doctor, believing she was too weak for antibiotics, had suggested, which included apple cider vinegar and fish oil.

But O’Rourke’s body had other ideas. While she considered whether to pursue a diagnosis of Lyme disease, her symptoms got so bad that she believed she was dying. In one darkly funny part of the book, she visits an eccentric doctor with a seemingly distant relationship with the scientific method, who infuses her blood with ozone and claims that a patient of his manifested bruises during treatment because of her “hidden trauma.” In the end, there was no alternative for her but to try the antibiotics, a treatment that is controversial for patients outside of the initial Lyme infection. But it worked: The antibiotics “gave me my life back,” she writes. She wasn’t cured, yet the antibiotics were “a turning point” for her health. It’s deeply admirable that after all this, O’Rourke refuses to give the reader trite reassurances that the “wisdom” gained from her experience with chronic illness was somehow worth it, or that her life isn’t that bad. She firmly reminds us that “illness is shit” and that it is “not redemptive unless it happens to be for a particular ill person, for reasons that are not replicable nor should they be said to be so.”

The Invisible Kingdom is an important and powerful book in many ways, but perhaps its most valuable contribution is the way it articulates the loneliness and frustration of having symptoms that superficially resemble the pains and pressures of contemporary life in the United States while being much more severe. “Complaining of fatigue sounds like moral weakness,” O’Rourke observes. “In New York City, tired is normal.” But what she was going through, of course, was far worse than just being sleep-deprived because you stayed out late and live next to the G train. “Tired” doesn’t come close to describing what O’Rourke went through: She was experiencing fatigue and brain fog so severe that she forgot the word “spring” and couldn’t read poetry, let alone write it. This wasn’t sleep deprivation, she assures us; it was her “body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong.” Over and over, O’Rourke strives to convey that her symptoms really were that bad, that they really were disabling. (Perhaps a healthy person reading the book might need more convincing than I did.)

Chronically ill people often react to this burden of justification by defining themselves by their illness, a conundrum O’Rourke also explores throughout The Invisible Kingdom. You spend so much time being ill and justifying that state of existence to yourself and others that it becomes not “only an illness, [but] an identity, a membership in a peculiarly demanding sect.” But what happens if your illness changes? What if, despite your most melancholy expectations of feeling like this forever, you get a little better, or even a lot better? Your unwelcome but familiar identity fades too.

Perhaps for this reason, one of O’Rourke’s first reactions to getting better was “sorrow.” This feeling is common among the chronically ill; I’ve felt it myself, adjusting to a life with far fewer migraines on a new, $19,000-a-year medication. In a recent Slate piece, Isobel Whitcomb wrote that her remarkable progress in reeducating her brain not to feel chronic pain anymore was “jarring,” leading her to “grieve” all the experiences she had missed out on; the sudden improvement made her previous struggles seem “random.” I’d suggest it’s also simply the ache of adjustment, after years of constantly having to “prove,” to yourself and others, that you are sick, that you cannot work or do the things others expect of you. When I was a kid, a trick we did at school was to push hard with both arms outward against someone pushing in; when they release you, your arms keep going, spreading wide, without meaning to. Losing the burden of illness is similar. Your mind takes time to adjust to the sudden absence of that pressure.

Much of this anxiety and defensiveness comes from the American approach to work, which is psychotic. We are constantly being judged not just on our ability to work but on our willingness to work hard, to hustle, to strive, to make more money. People don’t want to work anymore, middle-aged conservatives reliably lament, no matter how low the unemployment rate is. This is not just a cultural thing, your classic “Protestant work ethic” in effect. America has no mandated paid sick leave, no bereavement leave or parental leave, let alone vacation. Only 56 percent of workers are eligible even for unpaid medical leave, not including those who would just be too afraid to ask. Some people take jobs precisely because they are sick, to pay for treatment. If you are too sick to work at all, getting public disability benefits is an even bigger challenge. Eligibility is conditioned on an assessment of your ability to work at any job, not just the ones you’re good at, and 63 percent of Social Security Disability Insurance applications are denied. For those who don’t have the lifetime earnings to get SSDI, the maximum payment for Supplemental Security Income is $841 a month, less than the federal poverty level.

All of this means that being recognized as sick is not just about social acceptance or emotional healing; the stakes of your condition being recognized are much more severe than that. It can mean the difference between being able to take medical leave and not, or keeping your job and your health insurance, or getting accommodations at work. If you don’t have a job at all, the absence of a social safety net ensures that your life is not going to be easy or even tolerable, with the assumption being that it’s all your fault. Perhaps we would feel less of a need to explain and defend how bad we really feel if it wasn’t so inherently dangerous to be sick in the United States, if it didn’t mean hurtling ever closer to the precipice of poverty or homelessness.

Brain fog and fatigue, the symptoms that affected O’Rourke the worst, prove to be a particular challenge because of their invisibility. (Same goes for migraines: I’ve been tempted to send bosses vomit selfies to prove my need for sick leave.) Our disability welfare system simply wasn’t created to handle these types of illnesses. In 2017, I interviewed a woman who spent nine years trying to get Social Security to accept that her daily migraines were disabling. Social Security disability benefits were created to deal more with injured workers—in their first iteration, passed in 1956, Social Security disability payments covered only workers between the ages of 50 and 65 with 20 quarters of work history—not women who can’t get out of bed in the morning. The risk of covering someone who actually isn’t all that disabled is considered far greater than the reality of not protecting many people who really are sick and disabled. The sick must constantly prove their sickness, and despite their best efforts, they may fail at doing so.

This aspect of O’Rourke’s experience was chillingly familiar to me. The internalization of this harsh logic is incredibly powerful. She writes of questioning whether her problems stemmed from illness or from “some internal weakness, a lack of moral fiber.” Surely, she chastises herself, if she could “window-shop on the internet,” could she not “summon the willpower to be writing?” This was quite literally me on the nights when I felt unable to write this review, with a headache over one eye, pain in my neck and shoulder, and dull nausea in my stomach, browsing for rugs online. Why is that possible when the physical act of using a laptop is exactly the same for the writing I felt I couldn’t do? I know why—writing is hard; rugs are fun—but still the question, the guilt, gnaws. But feeling guilt is one thing; at least I wasn’t making the case to a bored bureaucrat that I should be allowed money to live.

The real villain of The Invisible Kingdom is not O’Rourke’s illness—after all, as she articulates well, the boundary between herself and her autoimmune illness isn’t so clear—but rather America’s medical system. Many of the doctors she saw were dismissive and disbelieving or just downright rude. They shrugged off her symptoms if her lab test results didn’t indicate that anything was physically wrong. They told her she was just tired. No wonder she drifted toward alternative medicine, where the practitioners listened to her. The “adjustments” prescribed by her alternative doctors showed “their willingness to work with me on lifestyle changes” and also proved beneficial: Something called Myers’s cocktails, “an herbal antiviral regime and a series of IV vitamin drips,” “helped tremendously,” she writes. (It’s worth noting that there is evidence that intravenous placebos provide a stronger effect than pills.) These benefits tended not to last, though; there was only so much that eating flax and giving up eggs could do. She felt worse while living in Los Angeles, where it was easier than ever to stick to a routine of spirulina and dry-brushing. In the end, the antibiotics were the solution; it was just that her conventional doctors never suggested them.

This dilemma is genuinely difficult to solve. American medicine too often ignores patients’ narratives, particularly those of women and people of color, and is too focused on treating specific illnesses. The structure of our health care system’s financing exacerbates these problems, making it far more profitable to become a specialist who just treats one organ system than a primary care doctor who spends more time with patients and prescribes cheap generic medications and exercise. (To say nothing of the fact that visiting a specialist is more expensive and has a longer wait time.) Drug companies make more money producing expensive specialty biologics that aren’t much different from ones already on the market than they would manufacturing cheap insulin that would save more lives. It’s no wonder patients don’t trust these institutions, if all their experiences have been bad—or if they couldn’t afford to have them in the first place.

Yet it’s also true that many of the people who experience American medicine’s flaws end up believing in far worse alternatives, like rejecting vaccinations or making their children drink bleach. The vacuum created by the lack of adequate health care is too easily filled with hucksters who make you feel better by Hearing You and Seeing You, but then charge you to pump your blood with ozone or sell you sugar pills. People with poorly understood conditions, like O’Rourke, are uniquely vulnerable to this sort of thing. In the preface to his 1970 book Migraine, Oliver Sacks wrote that some of his patients were helped by drugs and others by “the magic of attention and interest.” The Invisible Kingdom makes an excellent case that this doesn’t have to be “magic”; it’s just good medicine.

As O’Rourke notes throughout, the medical system fails Black people in particular. And for millions of uninsured and poor people, the system is simply out of reach. We still need more testimony from people who are not, in O’Rourke’s assessment of herself, privileged white women. Her book features a few interviews with chronically ill people who have autoimmune conditions similar to hers, but I wish we’d heard more from people from different walks of life. What do they do when their insurance doesn’t cover something? How do they cope with working at hard, physical jobs? Have they applied for disability benefits? If they have, do they manage to access alternative treatments on what are often poverty-level wages? O’Rourke discusses how the daily “stresses” of modern life exacerbate sickness, as well as her mixed feelings at being told that her “ambition” was causing the stress that worsened her condition. I wonder if sick people who walk miles around an Amazon warehouse for 10 hours at a time are ever told they’re too ambitious, are working too hard, and need to quit; and if those patients could do anything but laugh at such a suggestion.

The Invisible Kingdom is not about long Covid, but the pandemic haunts its pages; after all, its symptoms are very similar to those of persistent Lyme, and O’Rourke notes that some researchers believe it may have the same mechanism of “successive infections.” In a late chapter, she summarizes how medicine has begun to accept the existence of long Covid, in turn spurring “a new kind of openness to treating” people with other types of chronic illness. A recent study by the Centers for Disease Control and Prevention found that as many as one in five Covid-19 patients will develop long Covid. This has led some, including O’Rourke, to see an unexpected silver lining: Perhaps “the sheer breadth” of the problem will get the medical profession, and the public, to take it seriously in a way that other autoimmune illnesses haven’t. Perhaps that will lead to more research, or the discovery of reliable biomarkers for the fatigue and brain fog that many doctors find it easy to dismiss. Perhaps we will even see better access to the social safety net because of the long Covid epidemic. If things get bad enough, perhaps something will finally change.

Some hopeful liberals said the same thing when the pandemic hit. Faced with the litany of cruelties in American society that the virus laid bare—the racial disparities in illness and death; the obvious injustice of class determining whether you got to stay home and avoid the virus—perhaps American society would realize its mistakes. The government response in the first year or so of the pandemic was uncharacteristically speedy and bold. If we could pause student loan payments and institute an eviction moratorium so quickly, why couldn’t we just make those permanent? Maybe, some thought, we would realize that providing a social safety net was actually easy, affordable, and incredibly good for us all. Workers would get a whiff of freedom, walking away from low-wage jobs that put their lives at risk, returning only for higher wages.

Instead, the opposite has happened, at least so far. A little taste of those good things led to the total collapse of the Democratic agenda in Congress; the government went from sending out free money to being unable even to extend free subsidies to health insurance companies. The Biden administration declared that we were moving past Covid-19. Workers had to go back to work, and if they were afraid of the virus, who cares? Go anyway, or just go away. Benefits dried up. A million people in the United States died from Covid-19. The Invisible Kingdom reminds us how cruel illness can be, but much of that cruelty isn’t the result of some mindless virus. It is what we do, on purpose, to each other. The Washington Post reported in March that there are now “months-long” waits just for the tests that can show long Covid, and that the process of applying for disability benefits, private or public, is “grueling.” We see you, we hear you; now get back to work.

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