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How a Mystery Illness Cost One Writer a Decade of Health

A review of The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke

The Invisible Kingdom, by Meghan O'Rourke

Memoirs of illness, which seemed so startling and courageous when their first modern iterations by authors such as Kay Redfield Jamison and William Styron were published, are now fairly standard fare. They tend to follow a formula that reaches an apotheosis as the author either triumphs over the disease and winds up grateful for its lessons, or succumbs and writes the final pages wiser for the suffering, though sometimes leaving heirs to wrap up the story. In other words, such books are sometimes inspirational and sometimes quietly tragic, but usually redemptive. Self-reflection on maladies has become such a commonplace that it is almost impossible to bring freshness to the project.

This makes Meghan O’Rourke’s pellucid The Invisible Kingdom — a profound, sometimes lyrical, deeply moving portrayal of a vague constellation of illnesses — all the more remarkable. She steers ably between the Scylla of cynicism and the Charybdis of romanticism, achieving an authentically original voice and, perhaps more startlingly, an authentically original perspective. A poet by choice and an interpreter of medical doctrine by necessity, she brings an elegant discipline to her description of a horrific decade lost to overdetermined symptoms that were misdiagnosed or dismissed as hypochondria. O’Rourke is not afraid to plumb the depth of her affliction; there are no niceties about starving children in the developing world who have it worse, though she does nod to less advantaged populations for whom conditions such as hers invite medical neglect and occasion bankruptcy. The book reads in part like a good mystery: She alludes to being better from the start, but we are constantly guessing which doctor or intervention made the decisive difference. Her primary complaint seems to have been Lyme disease with some kind of autoimmune and microbiome complexities thrown in, but these diagnoses either generate or coexist with other complaints, and though she is much better now, she remains far from well. At her worst, “it felt as if my body were made of sand, and as if molasses had invaded my brain.” Over and over, she finds language sufficient for her intense debility.

The book is not only a memoir of her illness, but also a document of years of research, some of it for this book, but much of it simply to preserve her sanity. “My ability to accumulate information felt like the only control I still possessed,” she writes, noting that it takes an average of three years and four doctors for an autoimmune disease to be diagnosed. During this period, patients are often disbelieved, as she was, told that they are imagining symptoms they feel very definitively. O’Rourke speaks of “the special horror of being not only ill but also marginalized — your testimony dismissed because your lab work fails to match a pre-existing pattern.” Some of her trust in doctors was naïve or inchoate, but she manifested a doggedness that is the backbone of the book. In some instances, her courage was misguided. “Many of us are people who, faced with no good choice, shrug our way into the hands of those we don’t trust in search of help,” she writes. But she had to persevere: not only because the condition she had was intolerable, but also because bearing down on the reality of her suffering made her feel at least vaguely recognizable. “The illness was severe but invisible. And that invisibility made all the difference — it made me invisible, which itself almost killed me.” Her book has very little celebration in it, but it is a triumphant document of her refusal to be unseen, her ongoing dedication to cogency. “Where science is silent, narrative creeps in,” she writes, and her construction of narrative is her last defense.

The experience of illness is one of dependency, and the social mores of our day regard dependency as weakness. “Your need, when you are sick, can squeeze up inside your chest, balling its way up and out of your throat,” O’Rourke writes. “I pictured it as a thick, viscous, toxic gel that slid out of me at moments when nothing else could.” O’Rourke was terribly sick, with strange neurological spasms and abrupt agonizing sensations, sometimes here and sometimes there; with a persistent brain fog that made it nearly impossible to function; with odd digestive intolerances she tried to temper through spartan dietary restrictions. She stayed in bed for days at a time, taking a break only to see yet another doctor. She describes being presumed to have somaticized grief and trauma, an explanation that, she says, seems to erase “the obdurate reality of the body.” Yet her body was all that she could inhabit. “I thought I couldn’t remain in the box that was my body anymore — and yet I had to.”

“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. … I will not say the wisdom and growth mean I wouldn’t have it any other way. I would have it the other way.”

Her quest is ultimately existentialist, a literalization of Sartre’s inexactitudes. “I’m not myself, I kept thinking,” she writes. “But then who am I? And who is this ‘I’ who knows that ‘I’ am not ‘myself’?” And then later, “The entanglement of self and sickness became a mirrored distortion, a fun house I feared I was never going to escape, when I realized that I couldn’t tell whether my ‘self’ was attacking ‘myself’ without ‘my’ knowledge or influence.” And finally: “I was not myself, but if I was not myself, how did I know that? It was as if the old me, the authentic me, were inside, struggling to break free of the forces that had inhabited its body. The ghost within. … Ghosts haunt themselves into being.” O’Rourke was no longer who she had been — but then, none of us is who we were. We often say, “If I were you,” but of course if I were you, I wouldn’t be myself, so what does it mean for me to be you? We recover and say that we are back to our “old self,” but what new self has become the old self? O’Rourke exposes the ways illness coincides with time to undermine identity.

Her book can be humorless to the point of self-pity, and sometimes this becomes tiresome; even the dying can find grace in some levity sprinkled through their narratives of decay. Indeed, hilarity is often the tool by which intimacy with the reader is achieved. But O’Rourke seems to be above such pandering. What she endured wasn’t funny; it is the occasion neither of wit nor of exuberance. For all its visceral force, her prose is literal, urgent, packed into the tight container of a single book about multiple sicknesses and disappointments and losses. In this era when we understand so much, we still fall short on chronic illness, autoimmune disorders, disruptions of the microbiome, the lasting effects of Lyme, long Covid and a variety of other such complaints. She refuses to sugarcoat the reality she has endured. “There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. … I will not say the wisdom and growth mean I wouldn’t have it any other way. I would have it the other way.”

The book will be helpful to people in O’Rourke’s position: those who are suffering with confusing, unexplained illnesses. It is likewise a commentary on medicine as it exists today, puncturing our fantasy that diagnosticians can reliably make clear diagnoses, that the course of treatment upon diagnosis is usually clear and specific, that medicine is straightforward and that bodily ills can be targeted. O’Rourke is not blithely holistic in the New Agey, potpourri way of so much amateur writing about illness. But she does entertain the idea that there is insight beyond what is delivered by the men in white coats who populate the corridors of American hospitals, and then chaos beyond that insight. While her full diagnosis is never clear, her writing consistently is.