Review: How America fails chronically ill people, in one memoirist's diagnosis

I could not have written this review last fall. Deep in the supposedly energetic second trimester of pregnancy, my heart rate regularly skyrocketed for no discernible reason, my chest tightened like a fist and exhaustion pulled me under by 11 a.m. I couldn’t work for weeks at a time. My obstetrician’s office intimated that any ailment was a tolerable byproduct of gestation. An ER doctor, a cardiologist and a half dozen nurses asked me if I was sure I wasn’t having panic attacks (all day, every day?). I recall having my knee gently patted several times. If it weren’t for a chance encounter with a different OB who recognized the signs of thyroid disorder, my complaints would have been written off as just that — complaining.

I’m sharing this because I want it to move you to new heights of empathy. Cluck your tongue at my misfortune; meditate on my pain. But I know you won’t. I’d be bored by my malady if I weren’t me. To be in a body is to be alone.

Meghan O’Rourke’s second memoir, “The Invisible Kingdom: Reimagining Chronic Illness,” tries to connect us, skin to skin, with her own story of years spent in foggy exhaustion: electric sparks prickling her legs, joints stiffened into uselessness, memory gaps that left a lauded poet and essayist (now editor of the Yale Review) searching to remember the name of the season that comes before summer. For years she declined into long hazes of ambiguous illness, an autoimmune disease without name, treatment or recognition.

If this all sounds vaguely manageable, that’s because no summary can convey the wearying grind of chronic illness. Imagine having the flu for three years straight. Now imagine that by week six your physician says you’ll just have to live with it.

O’Rourke’s doctors ordered blood panels and laughably suggested iron supplements. Quacks offered pricey therapies like blood cleansing via ultraviolet rays. (What’s the difference between a doctor and a quack? Results.) “Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better,^” she writes, explaining the book’s premise. If she could relay this tale she might at least regain her connection to the larger, healthier world. “When we suffer, we want recognition. Where science is silent, narrative creeps in.”

Narrative wants a neat parabola. Sickness, meanwhile, has a bulbous, amorphous shape, more blob than arc. O’Rourke’s chronic medical issues followed a chaotic route — sick, then sicker, then OK, then much sicker, then somewhat better — with spidery little paths radiating outward.

At times, I wondered if she ought to have assembled her story into such a clear, cohesive form; why not mimic the density and swirl of a decade spent in clueless flu-like miasma? O’Rourke is a devoted chronicler of each month spent in her corporeal purgatory, listing each new symptom and reliving every ache. I craved more mess, less linearity. But then again, who needs that? Sick people are befuddled enough and well people don’t need any more reasons to ignore them.

Alongside her personal story (her first memoir, “The Long Goodbye,” chronicled her grief after her mother’s early death from cancer), O’Rourke charts the myriad ways chronically ill people are increasingly siloed as their diseases progress. The invisible kingdom is crowded but lonely. American physicians narrowly specialize and don’t effectively share files or hypotheses. Research into new treatments falls almost entirely on the patient while insurance companies do everything they can to shirk payment. Ninety percent of the women O’Rourke interviewed said doctors encouraged them to seek psychological treatment because “nothing was wrong with them.”

More broadly, our healthcare system is oriented toward acute care — shots, stitches, surgeries. Immunological mysteries like lupus and Lyme (O’Rourke’s eventual if imperfect diagnosis) befuddle physicians accustomed to spitting out prescriptions. The way medicine works in the modern world, O’Rourke writes, is that “tests told you what was wrong, and doctors told you how to fix it.” Turns out that’s not very helpful unless you can draw a straight line between ailment and treatment.

The book’s most significant feat is to be maddening without ever resorting to vitriol. If you didn’t already loathe the American healthcare system (a term that wrongly implies its disparate parts are connected), you will after reading “The Invisible Kingdom.” Certain patients — minorities, women, chronic sufferers — are said to “fall through the cracks,” but in O’Rourke’s telling the cracks are chasms, which most physicians blithely skip across without bothering to look down.

While O’Rourke never lets on that she’s furious — perhaps fury requires more spunk than the perpetually exhausted can muster — she is meticulous about assigning blame to the negligent. A sampling of enraging facts: On average, doctors interrupt patients after 11 seconds; the 15-minute appointment window is the byproduct of insurance companies’ billing policies; the United States “grandfathered in 62,000 chemicals” in the 1976 Toxic Substances Control Act without testing them, and now flame retardant is showing up in breast milk.

Her biggest target, however, is no single policy or corporation but the ethos of American individualism. We expect sick people to bootstrap or magically think their way to wellness. Patient, heal thyself! As a memoir “The Invisible Kingdom” can sometimes sink under its own misery, and as a close-up on autoimmune diseases it wades too far into the cellular. But as a cultural history of “one of the most powerful contemporary Western delusions: namely, the idea that we can control the outcomes of our lives,” it’s profound and almost soothing. Medicine has conquered far less of the human body than it would ever let on.

Fellow sufferers will see “The Invisible Kingdom” as a helping hand in the dark. Healthy people might not notice it on the shelves — might even think ignorance is a kind of protection. To that end, O’Rourke cites critic and biographer Hermione Lee on the greatest barrier to fixing what ails us all: “The world can’t afford regular sympathy; it would take up the whole working day.”

Kelly’s work has been published in New York Magazine, Vogue, the New York Times Book Review and elsewhere.

This story originally appeared in Los Angeles Times.