Why Doctors Like Me Need to Read Chronic Illness Memoirs
It's important for us to listen to patients' stories, even the ones where we don't come off looking very good
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On my easiest days as a gastroenterologist, the work makes exquisite sense. Maybe a woman comes back to my office just to say thanks, those antibiotics I prescribed a few months ago fixed things right up. Maybe in the endoscopy suite I examine a man with rectal bleeding, find a large precancerous polyp and remove it cleanly with an electrocautery snare. At such times the body seems as legible as it is in medical textbooks, its various compartments laid out in cross-section.
Many days aren’t so easy. My practice focuses on the muscle and nerve of the gut, where dysfunction often evades conventional diagnostics. For lack of obvious testing abnormalities, the most common disease entities I deal with—irritable bowel syndrome, functional dyspepsia, esophageal hypersensitivity—are defined on the basis of patterned symptoms, which I rely on patients to describe. The language used in my conversations with patients becomes increasingly important, both to characterize their distress accurately and to assure them that I take it seriously.
Credence, I’d like to think, is woven into the fabric of my subspecialty, depleted as it is of opportunities for hard proof—telltale biopsies and revelatory scans. We purport to squint a bit farther into the distance than our colleagues, locating pathology on landscapes that have yet to resolve themselves completely. Part of the satisfaction of my work, I suppose, is the self-satisfaction that comes with leaning into a certain romantic vision of the good doctor: radically sympathetic and deeply curious, keen to take suffering at face value, unintimidated by the prospect of a thousand-piece puzzle.
And yet I know more than a few patients who would object to that description of me. To them, I’m just the latest clinician to whom their illness has proven illegible. Sometimes they make it obvious that I’ve failed to meet their needs by throwing up their hands or storming out of the exam room. Other times I get the sense of it indirectly, months later, when my offer of a follow-up appointment turns out to have been quietly declined. Still other times I feel the tension brewing in my own gut—a quiet restlessness, the creep of doubt—in the face of a story so intricate or circular that it offers no real point of entry.
For want of a capable provider, patients looking to make sense of a complicated illness experience are left to do so on their own. The emergence of long Covid, with its shifting constellation of non-specific symptoms like fatigue, brain fog, and migratory pain, has catalyzed this conversation, making it harder to ignore. But published narratives from individuals stranded in these biomedical borderlands were already proliferating in the years leading up to the pandemic, documenting the twofold misery of debilitating illness and its dismissal by the professional orthodoxy. I’ve followed that work with interest, compelled by my field’s reflection in such an unflattering mirror.
The skeptical physician becomes a stock character in these narratives—conceited, distracted, and possessed of terrible bedside manner. He (it’s often, though not always, a he) encapsulates the tunnel vision of conventional medicine, its steady undercurrent of hubris. He’s the story’s most obvious villain, more nefarious even than the sickness itself, which seems to smolder as a direct result of the doctor’s belittlement. I’m well aware of the stereotype, which makes me wonder why I find myself still hewing to its script.
Blaming the system feels like a safe place to start, designed as it is to shunt certain patients to the periphery. In her 2020 memoir The Lady’s Handbook for Her Mysterious Illness, Sarah Ramey offers up an early rebuke of the capitalist drumbeat that guides contemporary clinical practice, privileging pathology that can be addressed quickly, procedurally, and at scale. “Virtually every problem in the health care system can be understood by following the money,” she writes, and the critique rings true to me too. The aforementioned snare polypectomy nets my employer more than an office visit that takes three times as long. Commercial incentives tend to predict which inexplicable diseases become, over time, explicable.
It’s also a critique that offers us clinicians some cover, to whatever extent we can identify alongside patients as objects within that system rather than its operators. That’s not always an easy distinction to make. Biomedical rhetoric tends to valorize doctors, pervading our professional lives with the illusion of authority. The power of my prescription pad obscures the role of pharmaceutical and insurance companies in deciding who actually receives treatment. Exhaustive diagnostic work-ups elide the compulsion not to miss anything with the fear of getting sued. The complex arrangement of subspecialty medicine implies that the knowledge among its branches is encyclopedic, which helps us exclude whatever strains of suffering fall outside their span.
Chronic illness narratives sometimes feature physicians who seem to lean into the cruelty of the system. In an episode of Bodies, the Los Angeles public radio show, a woman named Melynda describes a pelvic surgeon who repeatedly denies that a piece of implanted mesh might have led to post-operative pain. In her documentary Unrest, Jennifer Brea shares the story of a woman in Denmark with chronic fatigue whose doctor forcibly hospitalized her for over a year after calling her condition psychosomatic. Anecdotes like these, in which patients’ symptoms are explicitly contradicted, come to emblematize biomedical disbelief by manifesting it so starkly.
More often, though, doctors’ cruelty in the face of ill-defined distress reads as thoughtless, automatic, almost circumstantial. In her 2019 memoir Sick, Porochista Khakpour describes the common experience of being referred from one ineffectual expert to the next. “They seemed as clueless as I was, my body a mystery they couldn’t solve,” she writes, gesturing toward modern medicine’s utopian ideals as a kind of unkept promise. “I started to feel rejected by them, sensing their dread when they’d greet me, feeling the frustration in their bodies as they pored over yet another batch of bloodwork.” In her account of this demoralizing cycle, I’m struck by what sounds like an edge of empathy for her doctors and their collective shortcomings. Arrogance softens into ignorance; what they lack more than belief is bandwidth.
Given the standard configuration of doctors’ office visits, empathy usually runs as a one-way street. Illness sets the balance of power between patients and physicians, but framed diplomas on the wall and cash transactions at the checkout desk reinforce it. That asymmetry leaves little room for speaking frankly about the external constraints on our time and attention. There’s no elegant way to describe to a patient how thousand-piece puzzles become a different sort of exercise when there are a thousand others to assemble, each in an hour or less. So the pressure we feel finds cruder modes of expression: a raised eyebrow, a tapping foot, a barely muffled sigh.
Almost every chronic illness story ends with a call for change. Sometimes it’s aimed broadly, at the various structural biases that skew medical attention away from vulnerable populations. In her 2017 book Doing Harm, for instance, Maya Dusenbery attributes medicine’s antagonism toward women to a “knowledge gap” involving research skewed toward male bodies and a “trust gap” born of the long history of diminishing female complaints as some version of hysteria. These sorts of rubrics are helpful for scrutinizing patterns of injustice that infiltrate the entire profession.
Given the intimacy of first-person illness narratives, however, the injustices they detail often feel quite personal. Each patient dwells on the particular loneliness of suffering internally in the absence of external signs, of appealing for help again and again but never receiving it. Nested among medicine’s larger flaws is the more immediate crisis of a misunderstood diagnosis—from the myalgic encephalomyelitis at the center of Brea’s work to the chronic Lyme at the center of Khakpour’s to the series of others (postural orthostatic tachycardia syndrome, mast cell activation syndrome, complex regional pain syndrome) that cycle through Ramey’s.
Reading these books as a physician, I’m sometimes lulled into believing that the change they call for could begin in individual clinical encounters. Even if I can’t spend days parsing out every patient’s pain, I can control how much effort I put into investigating it—by ordering diagnostic tests at the boundaries of conventional practice, recommending experimental assays that claim to clarify diagnoses otherwise clouded in uncertainty. If money and lab data constitute the lingua franca of the medical-industrial complex, maybe they’re also the best available means for doctors to take chronic illness in good faith.
But beyond basic questions of resource stewardship, it’s hard to justify seeking out speculative information when you don’t know what to do with it. Independent laboratories across the country, for example, have begun offering stool tests that profile the gut microbiome—that is, the trillions of bacteria residing in our bowels. Some of my patients with unexplained abdominal symptoms bring their results with them to office visits, having paid for them out of pocket, laying out the pages for my expert interpretation. I glance over the various pie charts and bar graphs before confessing that I can’t make sense of them either. The frontiers of medicine double as its limits.
If the doubting doctor is a staple figure in chronic illness narratives, so too is the freethinking practitioner. She’s rooted in an alternative health framework, rejecting the subspecialty silos of conventional healthcare with the language of integration. She doesn’t take insurance, probably, but offers fees on a sliding scale. She chooses the route of radical affirmation, looking beyond the distorted lens of evidence-based medicine, walking confidently with her patients out on a limb. Why can’t I?
Sometimes I think I’m looking out for my patients in holding back, hoping to keep them from inadvertent harm. That harm might manifest physically, through unstudied cures that prove toxic in their own right; financially, through the stockpiling of snake oil; or philosophically, through heterodox wellness beliefs that lead, like rabbit holes, further and further toward the fringe. Less flatteringly, I’m also looking out for myself. Chronic illness narratives showcase how the experience can pull people outward, like the tide, risking their disappearance over the horizon, into the depths. Biomedicine serves as a convenient sort of mooring in that regard—a beacon light, however broken, leading me back toward solid ground.
Around ten minutes into her episode of Bodies, Melynda relates a parallel crisis around her erstwhile Mormonism, invoking feelings she holds on “a cellular, deep, spiritual level.” I paused at this phrase when I first heard it, struck by the arrangement of these words as synonyms, the way molecular physiology could abut matters of faith. Her conflation of the cellular and the spiritual felt careless to me, the sort of throwaway verbiage that leaves just enough space for pseudoscience to bloom.
But it also recalled the lyricism of certain pathology lectures in medical school, when my professors spoke to the body’s ongoing ability to astonish us despite our increasingly powerful ability to understand its functions at the microscopic level. It’s at that level especially that the body seems still to work in mysterious ways. It happens regularly enough, even in the most hallowed hospitals—doctors humbled by mild illnesses that end suddenly in death, or by dire prognoses inexplicably thwarted.
In general, I’m not a man of faith. On the rare occasions that patients’ families have asked me to join hands with them in prayer by the bedside, I’ve done so begrudgingly. I respect the devotion behind the request, but it’s a bit of an imposition. Still, among patients whose religious beliefs I don’t share, I try to swap atheism for agnosticism. It’s true for chronic illness too: when my clinical conversations hit a wall, I try to remember that I might just be too dense to pass through it.
Maybe that strategy is just another cop-out—one that gets us to a kind of decency but still falls short of mutual understanding. Agnosticism remains easy to confuse for apathy. Chronic illness advocates rightly argue that more research is needed to demarginalize these disorders and entrench them in reliable therapeutic paradigms. Until then, though, when I engage with these narratives and see myself in the figure of the doubting doctor, it’s hard to come up with a better defense than humility to the boundedness of my practice, deference to unanswerable questions.
I sometimes wonder to what extent authors like Khakpour and Ramey have clinical readers like me in mind. Biomedical resentment often carries the tenor of deliberate instruction, but it would lay bare my own bloated clinical ego to presume myself as their target audience, to imagine talking to me as their primary goal. Listening to a chronic illness story for hundreds of pages without interruption, without even the possibility of interruption, is an experience that could never be replicated in my office, and not just for the sake of time. There’s no opportunity to validate or refute the reality of these prolonged accounts, and no real need for it either. Skepticism loses its teeth; truth is in the telling. The standard configuration between physician and patient gets inverted—here I’m the one on the outside looking in.