Chronic illness TikTok through the eyes of a doctor

one of my My assignment in my third year of medical school was to ask a clinic patient if I could visit him at his home. The goal of the exercise (slightly smug, like many similar efforts to teach humility to future doctors) was to better understand the impact of disease on a patient’s life by encountering it in its natural context, as opposed to the anonymous exam room. The man I visited was in his early twenties and suffered from a genetic condition that had caused him to have delayed puberty, have a lanky build, and a lifelong dependence on testosterone injections. I sat across from him on a black leather sofa in his sparsely decorated ranch and asked him at length about his work, his childhood, his love life. He dutifully responded, too used to the pace of clinical interviews to ask me what exactly he was here to learn. That was 15 years ago, and even then he felt quaint, dressing up as some extinct species of country doctor, going through the motions of a house call out of curiosity rather than necessity.

These days, it’s pretty easy to find medical conversations in a domestic context. The telehealth paradigm brought on by the pandemic forced me, as a gastroenterologist, to scrutinize my patients’ homes for months, my line of sight angled at their discretion to face or belly button, kitchen backsplash or bedspread. padded. Elsewhere on the Internet, beyond the confines of privacy-compliant interfaces, other patients have presented their gastrointestinal challenges to a much broader audience. A woman who has been constipated for more than a week dances to to stimulate a bowel movement. Another woman with a feeding tube winks and smiles as she prepare a formula bag with a Miley Cyrus refrain. Stumbling through such intimate windows, I am struck by how once carefully solicited perspectives are now volunteering.

While social media platforms like TikTok provide a showcase for all kinds of chronic distress, certain complex illnesses are highlighted because they are often misunderstood. These diseases are sometimes called “invisible” because the disability involved is not obvious to the casual observer. In his recent memoirs, the unseen realm, writer Meghan O’Rourke expands this definition to clinical invisibility, focusing on conditions that clinicians may find “difficult to diagnose and treat” because they “defy existing frameworks.” Documenting the daily routines of these illnesses approaches the logic of a home visit, shedding light on what cannot be seen through the clinic lens. Some of these conditions, such as gastroparesis (a delayed stomach emptying that can lead to nausea, fullness, and abdominal pain), fall within my professional wheelhouse and are often grouped with others, such as hypermobility joint syndrome. , mast cell dysfunction, and postural orthostatic tachycardia. (POTS), for reasons that remain conjecture.

Certain patients I see in the clinic with mysterious GI symptoms show me home pictures as proof of the severity of those symptoms: selfies with distended bellies, clips of hysterical sobbing, photos of the wide variety of contents of their toilets. Many chronic illness TikTok cartoons have the same basic point, but with a bit more polish, instead being put on display as evidence for courts of public opinion. The motivation of many videos is expressed in the language of promotion, with the aim of raising awareness about a certain disease or, just as often, about the tendency of conventional medicine to trivialize it.

Several invisible diseases are also controversial diseases, labeled so because their biological relevance is sometimes framed as a matter of opinion. This tension arises for the same reasons that O’Rourke lists in his memoirs: the complexity of these diagnoses breaks with the reductionist logic of biomedicine, which does not have good methods to confirm them. Even a condition like gastroparesis, legitimate enough to support decades of federally funded and industry sponsored investigation, can be challenged on its margins. A test that quantifies the rate of stomach emptying can make the diagnosis, but a host of other variables (such as medications, blood sugar, and acute stress) will skew your results, and a single patient can flip over time from abnormal to normal and vice versa. Yet on TikTok, a label like gastroparesis carries weight, regardless of its clinical details, a stamp of legitimacy that is often portrayed as hard-earned.

Many patients fear the possibility of a feeding tube when I first mention it in the clinic, baffled by its invasiveness, this sudden detour along one of the body’s most familiar routes. The potential benefits go hand in hand with the risks (bleeding, infection, electrolyte imbalances, more pain), so it surprises me when other patients ask about the procedure by name. When I search for the term “feeding tube” on TikTok, I get, instead of a series of relevant thumbnails, a image of a cartoon stomach holding a cartoon heart and a button that invites me to “see resources” that happens to be from the National Eating Disorders Association. The underlying assumption, that anyone seeking information on feeding tubes would be better served by eating disorder counseling, is something that would seem risky to do in my office. There, it could be read as an example of the “medical gas light” which is often put counted elsewhere on the same platform. It makes sense to assess for eating disorders before recommending an invasive mode of nutrition, which could do more harm than help in such circumstances. But the question can be difficult to approach in a neutral way with patients who are already prepared to scrutinize clinical voices for notes of doubt or denial, much less in a medical history context where physicians (mostly male) ) have made the repeated mistake of attributing physical symptoms (mostly of women) to a disturbed mind.