Review: Meghan O’Rourke’s ‘Invisible Kingdom’ memoir of illness

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On the bookshelf

The Invisible Kingdom: Reinventing Chronic Diseases

By Meghan O’Rourke
Riverhead: 336 pages, $28

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I could not have written this review last fall. Deep in the supposedly energetic second trimester of pregnancy, my heart rate steadily skyrocketed for no apparent reason, my chest tightened like a fist, and exhaustion knocked me out at 11 a.m. I couldn’t work for weeks straight. My obstetrician’s office suggested that any illness was a tolerable byproduct of gestation. An ER doctor, cardiologist and half a dozen nurses asked me if I was sure I didn’t have panic attacks (all day, every day?). I remember gently patting my knee several times. If it hadn’t been for a chance encounter with another obstetrician who recognized the signs of a thyroid disorder, my complaints would have been written off like this – complaining.

I’m sharing this because I want it to take you to new heights of empathy. Click your tongue at my misfortune; meditate on my pain. But I know you won’t. I would miss my illness 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,” attempts to connect us, skin to skin, with her own story of years spent in hazy exhaustion: electric sparks stinging her legs, joints stiffened to uselessness, memory lapses that left a lauded poet and essayist (now editor of the Yale Review) struggling to remember the name of the season before summer. For years she declined in long hazes of ambiguous illness, an unnamed autoimmune disease with no treatment or recognition.

If all of this seems vaguely manageable, it’s because no summation can express the fatigue of a chronic illness. Imagine having the flu for three years in a row. Now imagine that at week six your doctor tells you that you will just have to live with it.

O’Rourke’s doctors ordered blood tests and ridiculously suggested iron supplements. Charlatans offered expensive therapies like ultraviolet blood purification. (What’s the difference between a doctor and a quack? The results.) better myself, she writes, explaining the premise of the book. If she could tell this story, she could at least regain her connection to a larger, healthier world. “When we suffer, we want to be recognized. Where science is silent, narrative creeps in.

Narrative wants a neat parable. The disease, on the other hand, has a bulbous and 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 slightly better — with little spider paths radiating outward.

Sometimes I wondered if she should have put her story together in such a clear and coherent form; why not emulate the density and whirlwind of a decade spent in an ignorant flu-like miasma? O’Rourke is a dedicated chronicler of each month spent in her bodily purgatory, listing each new symptom and reliving each pain. I wanted to more disorder, less linearity. But then again, who needs that? Sick people are confused enough and healthy people no longer need reasons to ignore them.

Along with his personal story (his early memoir, “The Long Goodbye”, chronicles his grief after his mother’s untimely death from cancer), O’Rourke describes the myriad ways in which people with chronic conditions become increasingly compartmentalized as their disease progresses. The invisible realm is populated but lonely. American doctors specialize narrowly and do not effectively share files or assumptions. Finding new treatments falls almost entirely on the patient while insurance companies do everything they can to avoid payment. Ninety percent of women surveyed by O’Rourke said doctors encouraged them to seek psychological treatment because “everything was fine with them.”

More broadly, our the health system is geared towards acute care — shots, stitches, surgeries. Immunological mysteries like lupus and Lyme disease (O’Rourke’s eventual, albeit flawed, diagnosis) confuse doctors used to coughing up prescriptions. The way medicine works in the modern world, writes O’Rourke, is that “the tests told you what was wrong, and the doctors told you how to fix it.” Turns out it’s not very helpful unless you can draw a straight line between illness and treatment.

The most significant feat of the book is to be infuriating without ever resorting to vitriol. If you didn’t already hate America’s healthcare system (a term that erroneously implies that its disparate parts are connected), you will after reading “The Invisible Kingdom.” Some patients – minorities, women, the chronically ill – are said to “fall through the cracks,” but according to O’Rourke, the cracks are chasms, which most doctors happily jump without bothering to look down.

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

Its biggest target, however, is not a single policy or company, but the ethic of American individualism. We expect sick people to magically initiate or think their way to wellness. Patient, heal yourself! As memory “The Invisible Kingdom” can sink into its own misery at times, and in its focus on autoimmune diseases, it flounders too far into cellular. But as a cultural history of “one of the most powerful contemporary Western illusions: namely, the idea that we can control the outcomes of our lives,” it’s profound and almost soothing. Medicine has conquered the human body far less than it would ever lead one to believe.

Fellow victims will see “The Invisible Kingdom” as a helping hand in the dark. Healthy people might not notice it on the shelves – might even think that ignorance is some kind of protection. To that end, O’Rourke quotes critic and biographer Hermione Lee on the greatest obstacle to solving what afflicts us all: “The world cannot afford regular sympathy; it would take the whole working day.

Kelly’s work has appeared in New York Magazine, Vogue, The New York Times Book Review and elsewhere.

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