The Invisible Kingdom

October 1, 2021

Admired poet O'Rourke, who came to the forefront with The Long Goodbye, a memoir about mourning, returns with a work that draws on her own experiences as well as 15 years of interviews with doctors, patients, researchers, and public health experts to examine why chronic and particularly autoimmune disease is escalating in the United States. As COVID-19 emerged, she refocused her efforts to include it in her study, which makes it especially relevant to what's called "the Long Covid"--that is, the persistence of symptoms from fever to fatigue that have affected some survivors.

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December 15, 2021
Tormented for years by enervating symptoms, the author spent most of her 30s dealing with--and trying to understand--chronic illness. "To become chronically ill is not only to have a disease that you have to manage," writes poet and Yale Review editor O'Rourke, "but to have a new story about yourself, a story that many people refuse to hear--because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need. My own illness story has no destination." Here, the author constructs that story from building blocks of personal narrative and science journalism, with deep dives into the technicalities of the immune system and the microbiome. The personal sections are engaging and well written--"What I had wasn't just an illness now; it was an identity, a membership in a peculiarly demanding sect. I had joined the First Assembly of the Diffusely Unwell. The Church of Fatigue, Itching, and Random Neuralgia. Temple Beth Ill"--as O'Rourke ably documents her myriad appointments with both Western and alternative practitioners, toting thick stacks of medical records, exploring various autoimmune diagnoses and treatment plans. Some are bizarre and/or dubious, others disgusting but legit (fecal microbiota transplant). Just when the author felt totally lost in the labyrinth of Lyme disease, prescribed the very antibiotics she believed had damaged her body in the first place, she finally found the beginning of a road to health. Though O'Rourke roundly rejects the notion that illness and suffering are somehow balanced by spiritual benefits, her conclusion offers hope. "Today, as a new paradigm for disease is emerging--pushed into full view by the coronavirus pandemic and the epidemic of long COVID--we must amend the simple 'germ causes disease, body overcomes disease' model....A holistic, individualized approach to medicine may matter more than was once thought." Emotionally compelling and intellectually rich, particularly for those with a personal connection to the issue.

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Starred review from December 13, 2021
With a poet’s sensibility, journalist’s rigor, and patient’s personal investment, O’Rourke (The Long Goodbye) sheds light on the physical and mental toll of having a mysterious chronic illness. “I got sick the way Hemingway says you go broke: ‘gradually and then suddenly,’ ” she writes before delving into the decades-long game of cat and mouse she played with symptoms ranging from rashes to exhaustion starting in the late 1990s. As she reflects on the labyrinthine system she had to navigate before eventually being diagnosed with late-stage Lyme disease, O’Rourke traces the history of Western medicine—from the “dramatic clarity” of germ theory to its murky treatment and dismissal of patients it can’t diagnose. As she writes, “It is a truth universally acknowledged among the chronically ill that a young woman in possession of vague symptoms... will be in search of a doctor who believes she is actually sick.” Wary of “late-capitalist” illness narratives that demand either wellness or wisdom from sick people, O’Rourke shirks a tidy recovery story and instead mines her abjection, astonishment, and vulnerability—and the radical illness writings of Alphonse Daudet, Alice James, and Audre Lorde—to offer a stunningly raw account of living with the existential complexities of a sickness that “never fully resolves.” Readers will be left in awe.

February 1, 2022
What does it mean to have a disease doctors can't diagnose? In her pensive inquiry into chronic illness, O'Rourke chronicles lots of tests and expense, frustration and anger, continued suffering and grief, uncertainty and lack of control, and skepticism from health care professionals and friends. Admitting to feeling ""intermittently unwell"" since college graduation and slowly worsening, she recounts an assortment of symptoms, including fatigue, aches, rash, fever, and brain fog. At one point, O'Rourke had nine doctors. While receiving conventional therapies (thyroid medication, antibiotics), she also sought alternative and complementary treatments. She perused internet forums where information, advice, and support were readily available. A definitive, unifying diagnosis remained elusive. O'Rourke was told she suffered from autoimmune thyroiditis, postural orthostatic tachycardia syndrome, genetic hypermobile Ehlers-Danlos syndrome, and chronic Lyme disease. Lessons learned: Anxiety, loneliness, and depression can accompany chronic disease. A trusting doctor-patient relationship is vital. Empathy is essential. Citing chronic fatigue syndrome, fibromyalgia, and chronic Lyme disease as examples, O'Rourke notes that many chronic conditions are poorly understood or controversial, which leads to marginalizing or delegitimizing patients' suffering. O'Rourke warns, ""The less we understand about a disease or a symptom, the more we psychologize, and often stigmatize, it."" An affecting portrayal of how we view disease, experience illness, and search for healing.

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Starred review from February 1, 2022

In this personal and deeply moving exploration of life with chronic illness, O'Rourke (The Long Goodbye) focuses on her own illness and weaves in the history of Western medicine and interviews with medical practitioners and researchers, for an overview of how Westerners regard autoimmune disease and chronic illness. O'Rourke details that the conflict isn't necessarily between a sick person and their disease but between a sick person and symptom-based Western medicine and health care. Chronic illness, in particular autoimmune diseases, manifest as painful acute symptoms and also vague periods of "unwellness" but different and changing over time and seemingly unrelated, the author explains. Without persistent self-advocacy, a support network, and a wealth of resources (and as O'Rourke illustrates so poignantly, even with these things), diagnoses may take years or never happen. O'Rourke acknowledges the white privilege and relative wealth that color her experience and reminds readers that health outcomes and diagnoses depend on race, class, and gender identity and expression. VERDICT This work may serve as an affirmation that people living with chronic illness are not alone. For those close to one with chronic illness or who would like to learn more, this firsthand account is both moving and educational.--Rachel M. Minkin

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