Medical Examiner

How We Live With Illness

Meghan O’Rourke’s The Invisible Kingdom will make you feel the toll of COVID in a new way.

A grid of copies of the cover of The Invisible Kingdom
Photo illustration by Slate. Image from Penguin Random House.

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Near the end of Meghan O’Rourke’s incredible new book, The Invisible Kingdom: Re-Imagining Chronic Illness, she speaks with a philosopher friend about the tendency to disbelieve sick people who lack a clear diagnosis but nonetheless insist that they are ill.

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“Recognizing your suffering puts a burden on me,” he says to her—speaking rhetorically. “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.”

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O’Rourke, a journalist, editor, and poet, began to feel unwell in her 20s and spent most of her 30s sick with a series of cascading autoimmune issues. Eventually, an intensive course of antibiotics prescribed to treat Lyme disease pulled her out of the worst of it. But it’s far from clear to her that a long-ago tick bite was the sole cause of her problems. While she reports feeling better, she still has symptoms. With all her professional research skills and long years of reflection, she still can’t say why she “lost” so many years to pain and fatigue.

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The result is a book about the culture and medicine of chronic illness akin to Susan Sontag’s Illness as Metaphor and Virginia Woolf’s essay “On Being Ill,” both works that O’Rourke discusses in her own text. Though you might reasonably find The Invisible Kingdom shelved in a science section, it is (like the works of Sontag and Woolf) a deep engagement with all the ways that culture shapes a patient’s experience. O’Rourke interviews doctors and scientists, and includes a lot of information on topics like viral triggers for chronic illness and the poorly understood connection between gender and autoimmune disorders. But for me, it’s the cultural analysis, intertwined with memoir, that makes Invisible Kingdom invaluable. Maybe even more so: Reading The Invisible Kingdom, as a well person, is an exercise in developing the kind of painful empathy that O’Rourke’s philosopher friend describes.

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Fifty million Americans may be currently dealing with poorly understood autoimmune disorders, says O’Rourke, citing the Autoimmune Association. “If every age has its representative signature disease,” she writes, “I contend that this type of chronic illness is ours.” As research progresses, these patients may get clearer diagnoses and treatment plans. But for now, the uncertainty (and disbelief) around their illnesses makes everything worse. O’Rourke remembers, of her early years of acute unwellness: “What I had wasn’t just an illness now; it was an identity, a membership in a peculiarly demanding sect. I had joined the First Assembly of the Diffusely Unwell. The Church of Fatigue, Itching, and Random Neuralgia. Temple Beth Ill.” She throws herself into the mangle of paleo diets, supplements, and dubious treatments, and feels herself lost in what she describes as an “exile of self-care.”

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O’Rourke’s strength is in finding a multiplicity of ways to draw the reader into the experience of feeling unwell past the brink of our language’s capacity to neatly categorize and summarize the experience. It is, as Sontag and Woolf have both alluded to, a difficult job to put words to the feelings that accompany illness. O’Rourke describes days spent searching online for clothes and furniture, coping with her exile into illness with endless browsing. She berates herself for doing this—why couldn’t she write, or teach, if she had the bandwidth to shop?—but eventually comes to understand it. “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,” she writes. “The worse I felt, the less I could do what I wanted (work, think), the more I searched for beauty and for pleasure.”

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She admits defeat in trying to capture her experience more directly: “In my fatigue and pain I couldn’t find the words to make myself legible to others,” O’Rourke writes. “And I still have not found them. This text is full of silences and vagueness and lacunae: when I write ‘brain fog,’ I imagine that your mind slides over the idea, unless you, too, have suffered from it.” (I haven’t, and no matter how many times I read about it in the accounts of long COVID sufferers, I am sure I do not understand.)

To read this book is to meet O’Rourke in a place of profound uncertainty. You are forced to put aside your need, as a reader, to know what actually happened in plain language (especially if you are translating the words from the other side of the well-unwell divide). You also will not see the writer’s problems solved. These uncomfortable sensations are O’Rourke’s goal. That need to know, she reminds us, is deeply ingrained in our culture, and that’s partly why chronic illness challenges us so much: It’s a quest with no end. “To the degree that my quest had an object,” she writes, “that object turned out to be learning to live with uncertainty and incapacity.”

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O’Rourke also rejects the relentless American insistence on identifying a “silver lining” in every negative experience, including living long term with illness. “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,” she writes. She memorably refuses to describe what happened to her as any kind of a “blessing in disguise.” “Is illness, in any way, a lesson?” O’Rourke asks. “Illness is a travesty; illness is shit; illness 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.”

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I first read Invisible Kingdom a half a year ago, when the galley of the book became available, and I thought to myself that (as its marketing materials stress) that this would be the book people would want to read in trying to understand the ways long COVID could affect our world. There are indeed many strands of this book that are applicable to what COVID “long-haulers” are going through: O’Rourke’s examination of how her illness affects her family life, her description of the problems that people with chronic illnesses face in trying to find (and pay!) physicians who can spend the time to investigate symptoms that come and go and manifest in odd and unexpected ways, the grief she experiences at the loss of her life as she understood it. I found reading this book opened up a new chasm in my understanding of the pandemic. I began to see suffering analogous to O’Rourke’s all around me. I feared getting COVID afresh. I thought maybe learning more about the prevalence of this kind of long-term illness could renew our collective sense of public health, in some small way.

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But as I reread the book again now in preparation to write this review, I see things differently. We are on the downswing of omicron and moving into a new, uncertain phase of pandemic management (what future historians may call the “done with COVID” era), even as nearly 2,000 people die from it every day. Both O’Rourke and Ross Douthat, whose book about his treatment for chronic Lyme came out last year, cite the words of Alphonse Daudet, a 19th-century French novelist whose syphilis (untreatable at the time) progressed to tabes dorsalis: “Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.” Is this not what we have, as a culture, done with COVID? Gotten used to it, if we are on the “outside,” even as people coping with its aftereffects go on suffering, in their “exiles of self-care”? The book now strikes me less as an agent of change, and more of a bleak description of what will continue to be.