THE INVISIBLE KINGDOM
A new look at chronic diseases
By Meghan O’Rourke
Memoirs of illness, which seemed so surprising and courageous when their first modern iterations were published by authors like Kay Redfield Jamison and William Styron, are now fairly standard. They tend to follow a formula that reaches a apotheosis when the author either triumphs over the illness and becomes thankful for the lessons, or succumbs and writes the last pages wiser for the suffering, though sometimes heirs are left behind to finish the story. to round. In other words, such books are sometimes inspiring and sometimes quietly tragic, but mostly redemptive. Self-reflection on illness has become so commonplace that it is almost impossible to revive the project.
This makes Meghan O’Rourke’s translucent “The Invisible Kingdom” – a profound, at times lyrical, deeply moving portrayal of a nebulous constellation of disease – all the more remarkable. She deftly steers between the Scylla of cynicism and the Charybdis of Romanticism, achieving an authentically original voice and, perhaps more amazingly, an authentically original perspective. Closer to choice and necessarily an interpreter of medical doctrine, she brings elegant discipline to her description of a terrible decade lost to overdetermined symptoms misdiagnosed or dismissed as hypochondria. O’Rourke isn’t afraid to gauge the depth of her condition; there are no jokes about starving children in developing countries who have it worse, although she nods to underprivileged populations for whom conditions like hers provoke medical neglect and lead to bankruptcy. The book reads partly like a good mystery: It alludes to being better from the start, but we’re constantly guessing which doctor or intervention made the decisive difference. Her primary complaint appears to have been Lyme disease with some sort of autoimmune and microbiome complexity involved, but these diagnoses coexist or coexist with other complaints, and although she is much better now, she remains far from healthy. At its worst, “I felt like my body was made of sand and molasses had invaded my brain.” Time and again she finds language sufficient for her intense weakness.
The book is not only a memoir of her illness, but a document of years of research, partly for this book, but much of it to preserve her sanity. “My ability to gather information felt like the only control I had left,” she writes, noting that it takes an average of three years and four doctors to diagnose an autoimmune disease. During this period, patients are often not believed, as she was told, to imagine symptoms that they feel very definitively. O’Rourke speaks of “the special horror of not only being sick but marginalized — your testimony rejected because your lab work doesn’t match a pre-existing pattern.” Some of her trust in doctors was naive or thoughtless, but she showed a tenacity that is the backbone of the book. In some cases, her courage was misplaced. “Many of us are people who, when we don’t have a good choice, shrug our shoulders at the hands of people we don’t trust looking for help,” she writes. But she had to persevere: not only because the condition she was in was unbearable, but also because she felt at least vaguely recognizable by accepting the reality of her suffering. “The disease was serious but invisible. And that invisibility made all the difference — it made me invisible, which almost killed me myself.” Her book is little celebrated, but it is a triumphant document of her refusal to be unseen, her continued dedication to persuasion. “Where science is silent, story creeps in,” she writes, and her construction of the story is her last defense.
The experience of illness is one of dependence, and the social mores of our time regard dependence as weakness. “Your need, when you’re sick, can squeeze in your chest and work its way up and out of your throat,” writes O’Rourke. “I imagined it as a thick, viscous, poisonous gel that slipped out of me when nothing else could.” O’Rourke was terribly ill, with strange neurological spasms and abrupt painful sensations, sometimes here and sometimes there; with a lingering brain fog that made it nearly impossible to function; with strange digestive intolerances, she tried to temper through spartan dietary restrictions. She stayed in bed for days at a time, taking a break to see another doctor. She describes being believed to have somatic grief and trauma, a statement that, she says, seems to erase “the persistent reality of the body.” Yet her body was all she could inhabit. “I thought I couldn’t stay in the box that was my body anymore — and yet I had to.”
