How a mysterious illness cost a writer a decade of health

Reinventing chronic disease
By Meghan O’Rourke

Memoirs of the disease, which seemed so startling and brave when their first modern iterations by authors such as Kay Redfield Jamison and William Styron were published, are now quite common. They tend to follow a formula that reaches a climax when the author triumphs over illness and ends up being grateful for its lessons, or succumbs and writes the wiser last pages for suffering, while sometimes leaving heirs to conclude the story. ‘story. In other words, these books are sometimes inspiring and sometimes quietly tragic, but generally redemptive. Self-reflection on diseases 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 and deeply moving depiction of a vague constellation of diseases – all the more remarkable. She deftly navigates between the Scylla of cynicism and the Charybdis of romanticism, achieving an authentically original voice and, perhaps more surprisingly, an authentically original perspective. Poet by choice and interpreter of medical doctrine by necessity, she brings elegant discipline to her depiction of a horrific decade lost to overdetermined symptoms that were misdiagnosed or dismissed as hypochondria. O’Rourke isn’t afraid to plumb the depth of his affliction; there are no niceties about starving children in developing countries who have it worse, though she nods to less-advantaged populations for whom conditions like hers invite medical neglect and lead to bankruptcy. Part of the book reads like a good mystery: She hints at being better all along, but you’re constantly guessing which doctor or procedure made the decisive difference. Her main complaint seems to have been Lyme disease with some sort of autoimmune and microbiome complexity, but these diagnoses generate or coexist with other complaints, and although she is much better now, she remains far from well. health. At worst, “I felt like my body was made of sand and molasses had invaded my brain.” On several occasions, she finds the language sufficient for her intense debility.

The book is not only a memoir of his illness, but also a document of years of research, part of it for this book, but much of it simply to preserve his sanity. “My ability to accumulate information seemed like the only control I still had,” 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 in disbelief, as she was, telling them that they are imagining symptoms that they are feeling very definitively. O’Rourke speaks of “the particular horror of being not only ill but also marginalized – your testimony rejected because your lab work does not fit a pre-existing pattern”. Some of her trust in doctors was naïve or incomplete, but she exhibited a stubbornness that is the backbone of the book. In some cases, his courage was misguided. “Many of us are people who, faced with the lack of a right choice, find our way into the hands of those we don’t trust seeking help,” she writes. But she had to persevere: not only because the state she was in was intolerable, but also because relying on the reality of her suffering made her feel at least vaguely recognizable. “The disease was serious but invisible. And that invisibility made all the difference – it made me invisible, who himself nearly killed me. His book contains very few celebrations, but it is a triumphant document of his refusal to be invisible, of his continued dedication to strength. “Where science is silent, narrative creeps in,” she writes, and her construction of narrative is her last defense.

The experience of illness is an experience of addiction, and today’s social mores view addiction as a weakness. “Your craving when you are sick can constrict inside your chest, working its way up and out of your throat,” O’Rourke writes. “I imagined it as a thick, viscous, toxic gel that slipped out of me at times when nothing else could.” O’Rourke was terribly ill, with strange neurological spasms and sudden feelings of agony, sometimes here and sometimes there; with persistent brain fog that made it almost impossible to function; with strange digestive intolerances, she tried to temper with spartan dietary restrictions. She remained bedridden for several days in a row, pausing only to see another doctor. She describes being presumed to have somatized grief and trauma, an explanation which she says seems to erase “the stubborn 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.”