It's hard enough dealing with a disease, but it's made worse when healthy people make remarks downplaying or dismissing your disease as a "journey" when it's actually a living hell.
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Opinion | First Opinion
I have long Covid. Don’t call my chronic disease a ‘journey’. I would sooner call the experience a bad trip
By Peter Swenson
Nov. 25, 2025
Swenson is professor emeritus in the Yale University Department of Political Science.
"Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid. Some people refer to the long Covid experience as a “journey.” I wish they would stop. I’m pinned down by it, stuck with it. I feel like I’m getting nowhere.
"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me. Among “you” I include medical professionals, writers, and editors. Between 2007 and 2015 the BMJ ran a series of articles written by chronic disease sufferers called “Patient Journeys” about a slew of disorders from restless leg syndrome to much worse. According to University of Pennsylvania linguist Mark Liberman, the word’s usage in the biomedical literature rose slowly and steadily from a low rate in 1990 to 2010, and then exponentially until 2024, by a factor of over 20. Ghost co-writing by AI probably played an accelerating role with its creeping homogenization of language and thought. By comparison, according to linguistics professor Jesse Egbert, general usage only about doubled over the same period.
"My personal MyChart page includes a “Care Journeys” section that lays out an itinerary and tour guide for my visits and procedures. I would sooner call them stops on a bad trip. For over a year I have suffered from long Covid, a post-acute infection syndrome, whose symptoms overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For me, those are debilitating fatigue, dizziness, occasional brain fog, dyspnea, hoarseness, muscle weakness, exercise intolerance, and crushing post-exertional malaise. Inflammation, autoimmune mechanisms, and dysautonomia are commonly thought to cause such symptoms. My tests show cardiac and neurovascular conditions like arrhythmias, pre-load failure, orthostatic intolerance, and likely because of severely impaired oxygen extraction, mitochondrial dysfunction.
"People with other such complex chronic diseases, and of course cancer, also read and hear their experiences referred to as “journeys” by well-meaning sympathizers. The treacly word triggers my gag reflex, and I’m far from alone. This should give users of the word pause. Virtually every one of 352 reader comments on a 2024 New York Times article by Lisa Miller called “When Did Everything Become a Journey?” expressed varying degrees of displeasure about the word’s use in both medical and non-medical contexts. The five most recent comments included “cringeworthy,” “repulsively fussy and flowery,” “pretentious,” and “yoga babble.”
"Colorful and occasionally cruder objections appear in chats among eye-rolling disease sufferers in the internet forum Reddit. “A bullshit word” said one person; others said it “makes my teeth clench and skin crawl” and “makes me throw up a bit in my mouth.” Another said, “If someone asks about my cancer journey, I will cut them and ask how their bleed-out journey is going.”
"Users of the peeving word are unlikely to be confronted with even mild objections in conversations with patients: Most people hesitate to antagonize or make things awkward. But one Reddit contributor rebelled, saying “I refused to be the uncomfortable one. It’s either them [or me] or both of us.” Very few defended what others called “toxic positivity” of the “warm and fuzzy” metaphor.
"The makeover of disease with metaphoric cosmetics is not new. In her book “Illness as Metaphor,” writer and critic Susan Sontag criticized “sentimental fantasies” concocted about disease — the awful disease of tuberculosis being her historical example of “aestheticization” and “glamorization.” The European literati once portrayed tuberculosis as “the romantic disease,” an opportunity for artistic, intellectual, or spiritual elevation. It was best savored with fellow sufferers, as exemplified in Thomas Mann’s “The Magic Mountain,” with idleness and isolation in a beautiful Alpine sanitorium, and maybe romantic possibilities on the side.
"More recently, author, political activist, and breast cancer patient Barbara Ehrenreich skewered the sticky sentimentality and infantilization of “breast cancer culture,” aided in its propagation and advertisement by the cancer-industrial complex and the cosmetics industry. Such swag as teddy bears wearing pink ribbons and turbans (to hide hair loss) is accompanied by tropes about the curative “power of positive thinking.” Cancer with its “redemptive power” can be a “growth opportunity” allowing “creative self-transformation,” “spiritual upward mobility,” or otherwise make you a better person.
"Clearly, there is something sweetly seductive going on for many, but far from disease sufferers and their consolers. It helps explain why the J-word, because it is not disease-specific, and therefore very portable, has spread like wildfire. The word “journey” suggests good things: “It’s the journey, not the destination!” Above all, it’s something willingly undertaken, not an abduction or a hijacking, or “a forced march,” according to one Reddit user. I doubt any trafficked persons ever described their passages into new lives as journeys. One typically chooses a journey for interesting, exciting, enriching, and even exotic experiences, preferably with novel scenery and enjoyable companions. What chronic disease offers you those? Chosen journeys, even if lonely and boring or arduous, at least have a desired destination. Nobody chooses a disease to be guided toward the cure, even if one is available. Mostly one drifts along with the prevailing winds and currents of uncertain, conflicting, evolving, and often unpleasant and ineffective therapeutics.
"In short, people like me are jarred by the contradiction between the dreary experience of disease and the almost exclusively upbeat semantics of journey. (The unintended exception is its suggestion of departure, separation, and loneliness.) Also making one’s ears hurt is that it is also now “an over-commodified buzzword” and “faux-spiritual branding tool” according to peeved Reddit users. Commercial product and service advertisers join with shallow self-help influencers on social media in touting hair restoration, teeth whitening, and makeover journeys you can embark upon. Online pharmacies gush about Ozempic as a ticket to a “weight loss journey” they will sell you. Some realtors promise “your home-buying journey,” and banks send out junk mail about “your credit card journey.” It’s hard to imagine that some patients aren’t turned off by the American Society of Plastic Surgeons’ advice about “your plastic surgery journey.” The word even echoes in corporate consultant-speak to clients about “customer journeys.” In short, while trivializing soul-destroying health problems, the metaphor inflates the significance of trivial ones.
"Sontag offered a more apt metaphor than journey, though she ultimately preferred straight, unadorned talk: illness as a place, and often a dark and lonely one, “the night-side of life” in “the kingdom of the sick.” Reddit users agree, variously describing chronic disease as a cage, a prison, or “a ditch on the side of the road of life you fall into.” Another called it a “derailment,” conjuring an image of injured people going nowhere fast. One ME/CFS sufferer said she felt “trapped in a glass box watching life go by without you.” Likewise, Ehrenreich titled one of her writings “Welcome to Cancerland.” In Meghan O’Rourke’s “reimagining” of chronic disease, “The Invisible Kingdom,” she echoes Sontag, describing feeling “locked away in the room alone” while suffering from multiple symptoms of chronic Lyme disease and autoimmune thyroiditis.
"I hasten to add that people often use the J-word about their own disease experiences, and in the U.K. at least, somewhat more often than health professionals. NHS verbiage surely bears some responsibility for that. According to a U.K. collaboration of linguists with Sheila Payne, a prominent end-of-life care specialist, providers used the euphemism only about 60% as often as patients.
"I can half understand why some Reddit commentators regard these self-described journeyers as “narcissistic.” But if you want to call your own disease experience a journey, I have no objection. Perhaps it has special personal meaning or succor to you, something akin to “it’s all part of God’s plan.” Maybe it has an analgesic effect, like a pain medication that changes the brain’s perception of pain.
"To each their own — but not someone else’s. As one person wrote, “nobody who hasn’t been through it gets to call it a journey.”
Peter A. Swenson is professor emeritus in the Yale University Department of Political Science and author of “Disorder: A History of Reform, Reaction, and Money in American Medicine.”
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