Since the late 1990s, Meghan O’Rourke battled symptoms no one, including O’Rourke herself, could explain: dizziness, night sweats, fatigue, electric shock sensations, stabbing pain, hives. When on a trip to Vietnam in 2012 a rash—seven or eight raised bumps arranged in a circle—appeared on her inner arm, she thought, It looks like Braille. But what was it trying to tell her?
O’Rourke is one of the millions of Americans living on the edge of medical knowledge—living with poorly understood and often misdiagnosed conditions, often involving dysregulation of the immune and/or nervous system. Eventually, she would be diagnosed with both chronic Lyme disease and an autoimmune condition, but for many years, she struggled to find a doctor who would take her symptoms seriously.
O’Rourke’s new book, The Invisible Kingdom: Reimaging Chronic Illness, chronicles her quest to heal, a quest that was often confusing, lonely, and, as she trudged from practitioner to practitioner hoping this one would finally provide answers, time-consuming and expensive. With a poet’s lyricism and precision—O’Rourke’s books of poetry including Sun in Days and Halflife—O’Rourke captures the terror as well as the drudgery of chronic unwellness. At the same time, she trains a sharp journalistic eye on a problem of staggering proportions: what she calls a “silent epidemic” of chronic illness affecting millions of Americans. These illnesses include autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome, chronic Lyme disease, fibromyalgia, dysautonomia, mast cell activation syndrome, and now, on a scale we are only beginning to comprehend, Long Covid.
I spoke with O’Rourke about the loneliness of being chronically ill, the need for an integrative care model of medicine, what it meant to have Covid hit as she was writing a book about long-term illness, and the challenge of finding meaning in a life that’s been turned upside down.
CC: In The Invisible Kingdom, you write that if every age has its “signature disease,” ours is the type of chronic illness that tends to go unrecognized in tests and is often viewed with skepticism by the medical establishment. This includes post-treatment Lyme disease syndrome, which you were eventually diagnosed with, autoimmune disorder, dysautonomia, and fibromyalgia. It occurred to me that you must have been in the middle of working on this book when the pandemic hit. What role does/did long COVID have in the “Invisible Kingdom” of the ill generally, and in your writing process more specifically?
MOR: The book was almost done when the pandemic began. In January 2020, I was already speaking with immunologists and virologists around the world about chronic illness, and because of those conversations, I was one of those people who quite early on was saying, “The pandemic is coming.” I was the Cassandra in my friend group.
Beginning in early June 2020, I started to report on people who were saying they’d gotten sick in March and still weren’t better. I had to hit pause on The Invisible Kingdom and think, how am I going to rewrite this book? I didn’t want to just stick in a mention of the pandemic. I wanted to integrate it into the book, because Long Covid made the things I was trying to explain in The Invisible Kingdom all the more urgent. By that I mean our siloed health care system; medicine’s resistance to crediting the testimony of patients with so-called “vague” symptoms; and the kinds of overly tidy containers it likes to put disease into.
In fact, before the pandemic, I had been reporting on this emerging paradigm of disease that now is familiar to many of us: the notion that infectious pathogens and organisms don’t all behave the same way in our bodies, as the 19th-century advent of the germ theory had suggested. Germ theory postulated that viruses and bacteria behave very similarly in different people, giving us this model that either you recover or you die from an illness. But as it turns out, some pathogens can trigger long-term illness in a subset of people for reasons we don’t fully understand. Conditions like autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and post-treatment Lyme disease syndrome can be affected by, or are thought to be triggered by, an infection that doesn’t resolve for some reason—whether because the pathogen is still there, or because the immune system has been kicked into overdrive, or because damage has been done to the body that we don’t understand.
One of the central questions in my book is, why is it so hard for people with these kinds of diseases to get a diagnosis? One of the answers I came to was that this paradigm of heterogeneous response to infection isn’t fully understood, and we haven’t availed ourselves of the tools to diagnose, treat, and help support these patients. What’s more, basic medical tests don’t always turn up problems in these patients. And modern medicine loves to measure; what it can’t measure, it doubts.
CC: One of the outcomes of Long Covid is that there’s increasing mainstream recognition that our “siloed” health care system can be very harmful. We need integrative care models.
MOR: For people with chronic illnesses or chronic pain, there’s just no coordination of care. In the U.S., we have a crisis care model, which is designed to avert death, or identify when you’re close to death, and take extraordinary measures to try to fix you. It’s not a true “Let’s help you thrive” system.
And it also doesn’t recognize that patients want basic validation even if there are no treatments available to them. I interviewed close to a hundred patients. Over and over people said to me, almost verbatim, something I also said to my husband: “I actually would feel happy if the doctor looked me in the eyes and said, ‘I don’t know what’s wrong with you, but I see that you’re suffering, and I’m so sorry. I wish I could help.’”
I finally did have one doctor do that, and it was transformative. I suspect she still doesn’t know how much she helped me. Just her saying, “I believe you, I see this. This is really hard. I have no idea what’s wrong.” But doctors are uncomfortable to be in a position of not having answers. One researcher I spoke to said that doctors are trained not to say “I don’t know.”
CC: Mysterious, unexplained illness can undermine a patient’s sense of self, but at the same time, not having answers can be threatening to doctors’ sense of who they are. I was struck by the words of Atul Gawande, which you quote: “Nothing is more threatening to who you think you are than a patient with a problem you cannot solve.” This question of “who am I?”—do you see it as one that patients and doctors must reevaluate, sort of alongside each other?
We think of illness as a state apart from normal life, as opposed to being a part of life.
MO’R: Absolutely. Doctors and patients together need a paradigm shift. As much as The Invisible Kingdom is critical of the medical system, it’s very much in support of individual doctors. Many doctors want to help more, but are trapped by bureaucracy, paperwork, and a kind of algorithm-based medicine—as opposed to having the opportunity to use clinical judgment. When you are looking at patients whose bodies are at the edge of medical knowledge, we need a more flexible kind of medicine. That means patient and doctor alike navigating uncertainty. I think med school is the place where we have to start equipping doctors. If I had another life, and I were to design medical education, looking at the scope of Long Covid we’re facing, I would say we have to add an entire unit to our education about uncertainty, about supporting patients when you don’t know the answer.
CC: In The Invisible Kingdom you talk about how you’ve come to see the body, including the ill body, as a site of social encounter. Can you explain more?
MOR: Certainly illness can be a lonely and isolating experience. It was profoundly lonely and isolating for me. But what I realized was that the deepest part of the loneliness was coming from our culture’s rejection of the idea that illness actually is a social experience. We’ve created a culture in which we purposely isolate sick people: when people go into the hospital they’re curtained off, they’re separated. They’re in a site of otherness. We think of illness as a state apart from normal life, as opposed to being a part of life.
And that brought me to the poet John Donne, who during a bout with spotted fever was very ill and in quarantine. His daughter was engaged and he encouraged her to go ahead and get married, because he wanted her to be taken care of if he died. He was lying in bed listening to church bells ring. There were people dying all the time, but there were people marrying all the time, too, and bells rang for both. After listening for his daughter’s wedding bells, he wrote the very famous line, “No man is an island.” We’re all “part of the main,” as he put it: “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.” When you ask who’s sick, you’re not realizing it’s also you. We’re all going to have this experience one way or another, this encounter with mortality.
Even though I’m more functional most days now, that experience of intense suffering is like a set of scars that no one can see.
America has embraced a model of individualism, which we apply to illness, too, in part because we don’t like to think about mortality and sickness. If we say it’s an individual’s problem, it gives us the illusion that we have some control over it. It also frees us from the obligation to take care of one another. And yet a lot of chronic illnesses are at least partly shaped by how we live as a society: by the chemicals around us, the lack of a social safety net, the quality of health care we get, the quality of our food. We frame these as individual decisions, but we as a culture, as a society, are regulating and shaping and making things accessible or not accessible, making some people more vulnerable to illness. Many poorer communities of color—chemicals are dumped near them, for example, instead of near the wealthier white neighborhood. Proximity to these chemicals can trigger outbreaks of autoimmune disease, outbreaks of asthma. With Covid, black and brown people are dying at higher rates from the infection, and that has to do with preexisting social policy and things like the stressors of racism.
CC: Toward the end of The Invisible Kingdom, you reference Arthur Frank’s The Wounded Storyteller. I admit I have mixed feelings about this classic text, which posits three forms of illness narrative: restitution (the body restored to its pre-sickness state), chaos (suffering without meaning), and quest (in which the sick person gains wisdom and understanding as a result of their condition). For Frank, the latter kind of narrative is the “best” one, but as Brian Teare argues in his essay for The Boston Review, the quest arguably has its flaws, too, since it suggests that “bodily suffering has a higher purpose, and that redemptive meaning not only can but should be fashioned out of pain.” Reading The Invisible Kingdom, I sense that you too seem to have mixed feeling about Frank’s quest narrative.
MOR: In my reading of Frank, he’s trying to say the quest narrative is a stronger story, or a more desirable story, than the restitution narrative, which is what our culture really focuses on. The restitution narrative really is a redemption narrative. Frank is trying to say we need to think about a kind of story about illness that allows for change, but not necessarily recovery or redemption. But it is true there’s this slippage in there, a possible interpretation of the quest narrative where, with that change, you come out of it on the other side and find a positive meaning of some kind—an impulse I call the “wisdom narrative” in my own book. And I did want to be careful to point out that to whatever degree my story is a quest narrative, that was only insofar as I had gotten better from where I had been. In the white spaces of this book, in the margins of this book, in the section breaks and the spaces between chapters, lies all of that history of suffering without meaning. Even though I’m more functional most days now, that experience of intense suffering, and the almost complete invisibility and silence around that suffering—that experience is like a set of scars that no one can see. That is why I resist the quest narrative and, importantly, what I call the wisdom narrative.