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Wednesday, July 24, 2024

Chronic Illness TikTok Through the Eyes of a Doctor

One of my assignments in my third year of medical school was to ask a clinic patient if I could visit him at home. The point of the exercise (slightly smug, like many such efforts at teaching humility to future doctors) was to better understand the impact of illness on a patient’s life by encountering it in its natural context, as opposed to the anonymous examination room. The man I visited was in his late twenties with a genetic condition that had led to delayed puberty, a lanky frame, and a lifelong dependence on testosterone shots. I sat across from him on a black leather couch in his sparsely decorated rancher and asked him at length about his job, his childhood, his dating life. He answered dutifully, too accustomed to the rhythm of clinical interviews to question what exactly I was there to learn. That was 15 years ago, and it felt quaint even then, cosplaying a long extinct species of country doctor, going through the motions of a house call on the grounds of curiosity rather than need.

These days, it’s fairly easy to find medical conversations set against a domestic backdrop. The telehealth paradigm sparked by the pandemic obliged me as a gastroenterologist to peer into my patients’ homes for months, my line of sight angled at their discretion toward face or navel, kitchen backsplash or quilted bedspread. Elsewhere on the internet, well past the bounds of privacy-compliant interfaces, other patients have staged their gastrointestinal challenges for a much wider audience. A woman who’s been constipated for over a week dances in order to stimulate a bowel movement. Another woman with a feeding tube winks and smiles as she prepares a bag of formula to a Miley Cyrus refrain. Stumbling past such intimate windows, I’m impressed by how perspectives once carefully solicited are now being actively volunteered.

While social media platforms like TikTok provide a showcase for all sorts of chronic distress, certain complex illnesses get emphasized because they are so often misunderstood. Such illnesses are sometimes termed “invisible” because the disability they entail isn’t obvious to the casual observer. In her recent memoir, The Invisible Kingdom, writer Meghan O’Rourke extends this definition to clinical invisibility, dwelling on conditions that medical practitioners might find “hard to diagnose and treat” because “they challenge existing frameworks.” Documenting these illnesses’ daily routines approximates the logic of a house call, shedding light on what can’t be seen through the lens of the clinic. Some of these illnesses, like gastroparesis (a delay in stomach emptying that can lead to nausea, fullness, and abdominal pain), fall within my professional wheelhouse, often clustering with others—like joint hypermobility syndrome, mast cell dysfunction, and postural orthostatic tachycardia syndrome (POTS)—for reasons that remain conjectural.

Certain patients I see in clinic with mysterious gastrointestinal symptoms will show me home footage as proof of those symptoms’ severity: selfies with distended bellies, clips of hysterical sobbing, photos of the wide-ranging contents of their toilet bowls. Many TikTok vignettes of chronic illness are making the same basic point, but with a bit more polish, and get exhibited instead as evidence for courts of public opinion. The motivation for many videos is couched in the language of advocacy, aimed at increasing awareness of a given illness or, just as often, of mainstream medicine’s tendency to trivialize it.

Several invisible illnesses are also contested illnesses, so labeled because their biological relevance is sometimes framed as a matter of opinion. This tension arises for the same reasons that O’Rourke lists in her memoir—the complexity of these diagnoses breaks with the reductive logic of biomedicine, which has no good methods available to confirm them. Even a condition like gastroparesis, legitimate enough to support decades of federally funded and industry-sponsored research, can be contested at its fringes. A test that quantifies a stomach’s rate of emptying can make the diagnosis, but a host of other variables (like medications, blood sugar, and acute stress) will skew its results, and a single patient can flip over time from abnormal to normal and back again. On TikTok, though, a label like gastroparesis carries weight, regardless of its clinical particulars, a stamp of legitimacy often styled as hard-won.

Many patients dread the possibility of a feeding tube when I first bring it up in clinic, unnerved by its invasiveness, this sudden detour along one of the body’s most familiar routes. The potential benefits come hand in hand with risks—bleeding, infection, electrolyte imbalances, more pain—so it surprises me when other patients ask for the intervention by name. When I search the term “feeding tube” on TikTok, I get, instead of a string of relevant thumbnails, a picture of a cartoon stomach holding a cartoon heart, and a button inviting me to “view resources” that turn out to be sourced from the National Eating Disorders Association. The underlying presumption, that anyone seeking information about feeding tubes would be better served by counseling on eating disorders, is one that would feel risky if I made it in my office. There, it might read as an example of the “medical gaslighting” that often gets recounted elsewhere on the same platform. It does make sense to screen for eating disorders before recommending an invasive mode of nutrition, which might hurt more than it helps in those circumstances. But the question can be difficult to broach neutrally with patients already primed to scrutinize clinical voices for notes of doubt or dismissal, let alone against a backdrop of medical history in which doctors (mostly men) have made the repeated mistake of attributing physical symptoms (mostly women’s) to a troubled mind.

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Conflicts around clinical storytelling are a longstanding feature of contested illness, with stakes that include therapeutic interventions both appropriate and inappropriate, administered or withheld. Those conflicts, which until now have mostly taken place behind closed doors, are now playing out in public. For critics of medical paternalism, social media has helped amplify voices long confined to the margins. Some might say the benefits of such amplification apply to all illness, not just contested ones, as the sociologist Arthur W. Frank suggests in his 1995 book, The Wounded Storyteller: “In stories, the teller not only recovers her voice; she becomes a witness to the conditions that rob others of their voices.” Stakeholders in mainstream health care institutions, meanwhile, might dwell on the downsides of clinical disillusionment coalescing into a social media genre, with the potential to further erode an already tenuous social trust.

Diagnostic uncertainty aside, I am reliably charmed when patients on chronic illness TikTok start dancing. I appreciate their interest in casting off oppressive clinical frameworks while at the same time adhering to the constraints of trending choreography. I like the pluck of declaring a body profoundly dysfunctional while moving it artfully and for strictly recreational purposes. In one video, a woman stands in her kitchen and lifts the hem of her sweatshirt to reveal a feeding tube sitting just above her navel. Kid Ink’s “Be Real” plays in the background, and with each line of the intro, the woman lists another faulty explanation by which her symptoms were previously dismissed: “stress,” “anxiety,” “you aren’t eating enough.” As the melody ramps up, her current diagnoses (gastroparesis and POTS) display at the bottom of the screen, and she shakes her hips and spins in a slow, celebratory circle. It goes without saying that no one ever dances in my clinic.

We know that these are the correct diagnoses because the patient tells us so. Her 14-second video invokes and then rejects the figure of the doubting physician who might tempt us into thinking otherwise. Profile pages are home turf, at least as compared with the doctor’s office (which we refer to in the singular, despite existing as a vast plural, because their chilly surfaces always feel sort of the same). Encountering illness narratives online reinforces my status as a visitor, wandering through someone else’s rooms, my understanding contingent on an idiosyncratic context, or whatever scraps of it I’m provided.

If the analogy to a home visit holds, does chronic illness TikTok then work as medical education? Has occasional lurking humbled my practice in any meaningful way? Recognizing that these videos aren’t seeking my assessment, it’s surprisingly difficult to stop myself from forming one. One of the most hurtful things you can say to a patient with chronic illness is that their symptoms aren’t real. It is something you can say even when you think you are saying something else—about the evolving model of the gut-brain axis, for example, or the therapeutic benefits of stress management. But because the scripts that govern these digital platforms accord them the quality of theater, it becomes easy to view all content, even illness content, as a kind of performance.

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Which is to say that online advocacy might end up entrenching conflicts over chronic illness instead of resolving them. In a recent essay for The Drift, B. D. McClay describes a subreddit, r/illnessfakers, devoted to scrutinizing the online output of sick individuals as a means of separating truth from fiction. The skepticism typically ascribed to close-minded clinicians has filtered out to nonprofessionals, many of whom draw on personal experiences with illness to judge the authenticity of others’ recorded distress. Maybe they’re also drawing on personal experiences with the internet at large, where cynicism is adaptive, rife as it is with trolls and scam artists who reliably prompt viewers to ask each other in the comments section, “Is this real?”

When I learned in medical school about rare cases of patients deliberately fabricating symptoms, it was defined by the concept of “secondary gain,” or the way acting sick can yield external benefits, like sympathy or attention. It’s one of the worst diagnoses you can give to someone whose condition you don’t understand. And yet the novel economies of the internet can lead clinical onlookers to unfairly scrutinize a patient’s motives, even within communities defined by medicine’s longstanding inattention toward them. Colleagues have quietly wondered whether secondary gain applies to follower counts, for instance, or to a patient with chronic illness who runs an illness-oriented business on the side. Popular media has circulated stories of an epidemic of medically unexplainable symptoms in which TikTok somehow served as their vector of transmission. Suspicion might even settle on the feeding tube itself, which, in addition to nourishing a depleted body, has the side effect of rendering an invisible problem visible.

Motives are implied within the narrow confines of the clinic: The practitioner is there to treat, and the patient is there to be treated. But of course my work is steeped in theater too. I first learned how to conduct histories and physicals as a medical student in the context of simulated patient visits, of the sort Leslie Jamison describes in her 2014 essay “The Empathy Exams,” a bit of role-play that served as the scaffold for my subsequent bedside manner. I retain various doctorly props (white coat, stethoscope) that make my expertise more believable. More to the point, my clinical conversations usually leave backstage a suite of unflattering incentives (professional ego, medicolegal defensiveness, the preservation of my lunch hour) that nonetheless bear upon my approach.

Steady accusations of medical hubris sometimes make me wonder whether trying to know another mind or body with any degree of confidence might represent just another strain of it. Clinical witnessing is always at some level a posture we assume, two actors improvising side by side. What if selective ignorance turns out to be the best long-term strategy? The risk of false impressions persists no matter which intermediate walls are breached—house, office, abdomen, or screen.

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