Book Review by Samuel Freeman

In 1988 general practitioner T.C. O’Dowd published a study in the British Medical Journal, “Five years of heartsink patients in general practice.”^[1] The study describes a group of patients who “exasperate, defeat, and overwhelm their doctors by their behaviour” and concludes that they are “a disparate group of individuals whose only common thread seems to be the distress they cause their doctor and the practice.”

I suspect all clinicians have encountered such patients and experienced “heartsink,” but O’Dowd is missing something when he writes that these patients are defined only by the angst they provoke in others. In “The Invisible Kingdom: Reimagining Chronic Illness” (Riverhead Books, 2022), Meghan O’Rourke does the important work of telling one such patient’s life and struggle.

O’Rourke, a poet and memoirist, spent over a decade researching and writing the book, which centers on her experience living with a mystery illness that plagued and defined her adult life.

Part memoir and part reportage, O’Rourke’s book is extensively researched. Its ambitions are commensurate with the amount of material it covers, as O’Rourke’s central claim is that the kind of unexplained chronic illness she lives with is emblematic of our age:

“[T]here is also a silent epidemic of chronic illnesses that are often marginalized, contested, or even unrecognized – illnesses that include autoimmune diseases, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), post-treatment Lyme disease syndrome (or chronic Lyme disease as many patients call it), dysautonomia, mast cell activation syndrome, fibromyalgia, and now, on a scale that is only beginning to be recognized, long COVID. If every age has its representative signature disease, I contend that this type of chronic illness is ours.”

How do the above conditions define our moment? For O’Rourke, both their suspected causes and medicine’s approach to them are implicated, insofar as they reflect the ills of our denatured, consumerist, high-tech society. The emergence of Long COVID as a clinical entity only heightens their relevance.

O’Rourke argues that ignorance and neglect of the microbiome, the harms of processed foods, alienation from nature, chronic stress and other toxic aspects of modern life contribute to the pathophysiology of these conditions, while medicine’s responses to them fall short. As a science, medicine is steeped in simplistic diagnostic schemas and thus dismisses and gaslights patients whose conditions do not fit predetermined patterns. As an institution, the antiseptic, industrialized and bureaucratic modern medical system is the antithesis of care and healing. Misogyny, systemic racism, and a generally dehumanizing approach abandon challenging patients to their suffering.

O’Rourke’s experience with illness is the book’s through line. Her symptoms begin in her early twenties: first painful “electric shocks” to her arms and legs and soon after “bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors” when she first seeks care through the conventional medical system. As a privileged American, she has access to specialists and diagnostic tests, and receives a possible diagnosis of lupus (which doesn’t stick) and of Hashimoto’s thyroiditis (which does, but is of minimal help).

As a unifying diagnosis continues to elude her doctors, O’Rourke is drawn further and further into the world of alternative therapies and practitioners, some reasonable (nutritional supplements, a focus on sleep and diet) and some alarming (getting her blood “treated” with ozone and UV irradiation, and then transfused back into her body). With the help of a tutor, she also studies the underlying science – the immune system, the microbiome, infectious disease.

O’Rourke’s experience with illness is excruciating. She lives through not only periods of debilitating fatigue and physical pain, but marital discord, social isolation, and profound despair. Ultimately, she gets her diagnoses: thyroiditis, Ehlers-Danlos syndrome type 3, Postural Tachycardia Syndrome (PoTS) and, most controversially and also most significantly for the improvement of her symptoms, Chronic Lyme Disease.

Although O’Rourke offers a persuasive and informed critique of medicine as an institutionalized practice, she sometimes applies her keen and critical intelligence selectively, especially when it comes to the alternative treatments she receives. Of the practitioner who administered the ozone treatment, she writes, “[he] was the first doctor I met from the integrative tradition who seemed like an outright quack.” She proceeds with the intervention anyway. O’Rourke suggests that her willingness to undergo nearly any intervention is the result of hopelessness in the face of longstanding suffering. That may well be the case, but nevertheless the reader is left with the impression that alternative therapies are not always subjected to the same unstinting critiques O’Rourke applies to more conventional approaches.

As a result, reading the book as a practitioner of Western medicine – even one who is skeptical and critical of the practice – can be dizzying. O’Rourke undergoes a succession of interventions whose effects one can never properly evaluate. As soon as she tries one, the narrative moves on to the next. It is hard to say if this reveals authorial ambition, a lack of rigor, or simply the truest reflection of O’Rourke’s experience over the years: fragmented, inscrutable, contradictory.

There is a paradox at the heart of this book: in unmasking Western medicine’s obsession with diagnosis and treatment at the expense of person-centered care, O’Rourke cannot let go of her own need for diagnosis and cure, even as she grapples with the impossibility of her expectations. As she writes, “[i]t is difficult to be a patient for long without coming up against the hard truth that what you are searching for and what your doctor is offering are two entirely different things.”

O’Rourke’s insight rings true as a fundamental disconnect in medicine. Medical knowledge and caregiver ability are limited. What practitioner has not witnessed the chasm that opens up when their training, skills, and tools fail to address a patient’s suffering?

When O’Rourke writes of her current rheumatologist that “uncertainties did not lead her to believe I was not ill; they led her to believe science did not yet fully understand the contours of what was making me ill,” she points at a way out of this entrenched dynamic and beyond “heartsink.” Naming and accepting the boundaries of what is known, what is expected, and what is possible might allow for a deeper mutual understanding between patient and practitioner, and thus create more opportunities for healing.

^[1] O’Dowd, T. C. “Five Years of Heartsink Patients in General Practice.” BMJ 297, no. 6647 (1988): 528–30. https://doi.org/10.1136/bmj.297.6647.528.

Samuel Freeman, MD is a pediatrician, writer, and host of the “Practicing” podcast. He lives in Montreal, Canada.