The electric shock sensations began in 1997, soon after Meghan O’Rourke graduated from college. Then came the vertigo, joint pain, night sweats, memory issues, and hives. When tests failed to identify the source, the author, who hails from a stoic Irish-Catholic family, tried to ignore her symptoms and press on. After a strange wrist rash appeared during a 2012 trip to Vietnam, she could no longer ignore she was acutely ill.
In “The Invisible Kingdom: Reimagining Chronic Illness,” O’Rourke boldly investigates the origin of her ills and possible cures. More crucially, she probes the cultural, psychological, and medical experiences of people with poorly understood or immune-mediated illnesses. The book also examines the epidemic of autoimmune disease, which affects some 50 million Americans today, including O’Rourke. For the author, whose diagnoses include Hashimoto’s disease and Lyme disease among others, navigating the path to health proves to be a dizzying and discouraging ordeal.
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O’Rourke’s primary quest is not to eradicate what ails her but to carve out a dignified existence, one in which she can be comfortable, employable, and sociable. Refreshingly, “Invisible Kingdom” avoids battle analogies and a redemptive narrative arc. Instead, O’Rourke focuses on the obstacles she faces as an undiagnosed or underdiagnosed sick person, as well as her Herculean efforts to research the origins of her incapacity. “The stories we tell about illness are almost entirely about overcoming it, but for illnesses that cannot be overcome, they are about growing wiser as a result of suffering,” she writes.
In this vein, O’Rourke confronts the unknown, the “knowledge gap,” where scientific inquiry has yet to catch up to patients’ needs, and where disease, and how it manifests, lacks certainty or a pat resolution. Vagueness and ambiguity are the heart and soul of chronic illness, and also the biggest barriers to understanding them; as she notes, “it is painfully clear that the invisibility of my illness was one of the most challenging parts of my suffering.” Which is why O’Rourke’s telling is an essential one.
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O’Rourke is a white, educated woman, and these factors give her a steep advantage to accessing adequate medical care over others, especially and including Black people. Her race and Ivy League degree do little to absolve her financial dire straits, though. The cost of treatment plunges her deep into medical debt. This, coupled with her inability to work efficiently, renders the state of her bank account all the more dismal.
Dignity during the process of seeking treatment is a tall order. It requires first and foremost that a patient be believed. This, O’Rourke soon discovers, is much harder than it looks. At appointments, she’s often met with disbelief, skepticism, and suspicion — daunting hurdles for her shot at wellness that highlight a gendered conundrum. Autoimmune disease disproportionately affects women (they make up 80 percent of patients), but health care professionals are less likely to take women’s concerns seriously.
Add to this health care professionals’ reflex to psychologize unexplainable symptoms. Though it’s not uncommon for anxiety and depression to accompany prolonged, inexplicable suffering, providers too easily dismiss a patient’s myriad symptoms as only psychosomatic in nature. The ghost of Freud and his theory of hysteria, O’Rourke posits, lingers in many corners of traditional medicine.
Chronic illness sabotages one’s autonomy, agency, and the kind of mind-body equilibrium regaled in self-help books. O’Rourke’s constant attention to the slightest developments in her body, whether they are new pains, side effects to medication, or reactions to special diets, drains her mentally in a way that rivals the fatigue of the illnesses themselves. Her chronicle of the dogged cost-benefit analysis she must regularly perform is illuminating.
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One of the book’s most riveting themes is how O’Rourke grapples with her identity as a sick person. Chronic illness, she opines, disrupts the narrative of the self. She is trapped in a fun house, standing before mirrors that elongate and flatten her, and must discern how to define herself amid distorted reflections. At her lowest point, she is “entirely unrecognizable,” her body only a vessel for agony: “When I was my most ill, my life was utterly compromised, and my very sense of self was gone.”
To some degree, O’Rourke’s memories of her pre-illness life, when going for a walk was as simple as putting on shoes and heading out the door, torture her. Her grief over years lost to rampant fevers, fainting spells, and time in waiting rooms, is palpable. Even after her health stabilizes, she can’t help but feel robbed of the good years her diseases stole from her.
“Invisible Kingdom” couldn’t be more timely. Since the onset of the pandemic, a new category of chronic illness has emerged — long COVID. O’Rourke watches in horror as people on message boards post desperate pleas to find relief for their shortness of breath, heart palpitations, and brain fog. And yet, she writes, there are some signs of hope: “The door is opening to novel ways of thinking about disease.” If there was ever a moment to implement sweeping institutional changes for how to diagnosis and manage chronic illness, she concludes, it is now.
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THE INVISIBLE KINGDOM: Reimagining Chronic Illness
By Meghan O’Rourke
Riverhead, 336 pages, $28
Anjali Enjeti is the author of Southbound: Essays on Identity, Inheritance, and Social Change, and The Parted Earth.