My chronic illness is not a “trip”, it’s a bad trip

Like approximately 20 million Americans, I suffer from an incurable post-acute infection syndrome called Long Covid. Some people call the long Covid experience a “journey”. I wish they would stop. I’m stuck by this, stuck with this. I feel like I’m getting nowhere.

Coating my bitter pill, a chronic illness, by calling it a “journey” might sweeten it for you, but not for me. Among “you” I include health professionals, writers and editors. Between 2007 and 2015, the BMJ published a series of articles written by chronic disease patients, called “Patient Journeys,” on a host of conditions ranging from restless legs syndrome to much worse. According to Mark Liberman, a linguist at the University of Pennsylvania, the use of the word in biomedical literature has increased slowly and steadily, from a low rate between 1990 to 2010, then exponentially through 2024, by a factor of more than 20. AI co-ghostwriting has likely played an accelerating role with its creeping homogenization of language and thought. For comparison, according to linguistics professor Jesse Egbert, general usage has only doubled over the same period.

My personal MyChart page includes a “Care Pathway” section that provides an itinerary and tour guide for my visits and procedures. I’d rather call them stops on a bad trip. For over a year, I have been suffering from long Covid, a post-acute infection syndrome, whose symptoms overlap with those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For me, it’s debilitating fatigue, dizziness, occasional brain fog, dyspnea, hoarseness, muscle weakness, exercise intolerance, and overwhelming post-exercise malaise. Inflammation, autoimmune mechanisms, and dysautonomia are generally thought to cause these symptoms. My tests show cardiac and neurovascular disorders such as arrhythmias, preload failure, orthostatic intolerance and probably due to severely impaired oxygen extraction, mitochondrial dysfunction.

People with other complex chronic illnesses, and of course cancer, also read and hear their experiences referred to as “journeys” by well-meaning supporters. The word molasses triggers my gag reflex and I am far from alone. This should give users of the word pause. Virtually every one of 352 readers comments on a 2024 New York Times article by Lisa Miller titled “When Did Everything Become a Journey?” expressed varying degrees of dissatisfaction with the use of the word in medical and non-medical contexts. The five most recent comments included “trustworthy,” “disgusting and flowery,” “pretentious” and “yoga babble.”

Colorful and sometimes cruder objections appear in discussions among people with rolling eye disease on the Internet forum Reddit. “A bullshit word,” one person said; others said it “makes me grit my teeth and make my skin crawl” and “makes me throw up in my mouth a little.” Another said: “If someone asks me about my cancer journey, I will cut them off and ask them how their bleeding journey is going. »

Users of the word irritating are unlikely to face even mild objections in conversations with patients: most people are reluctant to upset or make things awkward. But one Reddit contributor rebelled, saying: “I refused to be the one who is uncomfortable. [or me] or both of us. Very few defended what others called the “toxic positivity” of the “warm and fuzzy” metaphor.

The transformation of illness through metaphorical cosmetics is not new. In her book “Illness as Metaphor,” writer and critic Susan Sontag criticized “sentimental fantasies” concocted about illness – the terrible disease of tuberculosis being her historical example of “aestheticization” and “glamorization.” European scholars once described tuberculosis as “the romantic disease,” an opportunity for artistic, intellectual, or spiritual elevation. It was best enjoyed with other sufferers, as exemplified by Thomas Mann’s “The Magic Mountain,” with idleness and isolation in a magnificent Alpine sanatorium, and perhaps romantic possibilities on the side.

More recently, author, political activist, and breast cancer patient Barbara Ehrenreich has denounced the clingy sentimentality and infantilization of “breast cancer culture,” aided in its spread and publicity by the cancer industrial complex and cosmetics industry. Objects such as teddy bears wearing pink ribbons and turbans (to hide hair loss) are accompanied by tropes about the “healing power of positive thinking”. Cancer, with its “redemptive power,” can be a “growth opportunity” allowing for “creative personal transformation,” “upward spiritual mobility,” or making you a better person.

Obviously, something sweet and attractive for many is happening, but far from the sick and their comforters. This 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!” » This is primarily a voluntary enterprise, not a kidnapping, hijacking or “forced march,” according to one Reddit user. I doubt that trafficking victims have ever described their transition to a new life as a journey. One generally chooses a trip for interesting, exciting, enriching and even exotic experiences, preferably with new landscapes and pleasant companions. What chronic illness gives you this? Chosen journeys, even if lonely, boring, or arduous, at least have a desired destination. No one chooses a disease to be guided to a cure, even if there is a cure. Most of the time, we drift with the winds and prevailing currents of uncertain, contradictory, evolving and often unpleasant and ineffective therapies.

In short, people like me are shocked by the contradiction between the dreary experience of illness and the almost exclusively optimistic semantics of travel. (The unintentional exception is its suggestion of departure, separation, and solitude.) What also hurts ears is that it is now also an “overly commodified buzzword” and a “false-spirited branding tool” according to irritated Reddit users. Advertisers of commercial products and services join superficial self-help influencers on social media to tout the hair restoration, teeth whitening, and makeover adventures you can take. Online pharmacies talk about Ozempic as a ticket to a “weight loss journey” that they will sell you. Some real estate agents promise “your home buying journey” and banks send spam about “your credit card journey.” It’s hard to imagine that some patients aren’t put off by the American Society of Plastic Surgeons’ advice about “your plastic surgery journey.” The word even resonates in the speeches of business consultants to clients on “customer journeys”. In short, while trivializing soul-destroying health problems, the metaphor exaggerates the importance of trivial problems.

Sontag came up with a more apt metaphor than travel, though she ultimately preferred direct, unadorned delivery: illness qua illness. placeand often dark and lonely, “the nocturnal side of life” in “the kingdom of the sick”. Reddit users agree, describing chronic illness as a cage, a prison, or “a ditch on the side of life’s path that you fall into.” Another called it a “derailment,” conjuring up the image of injured people going nowhere at full speed. One ME/CFS patient said she felt “stuck in a glass box watching life go by without you.” Similarly, Ehrenreich titled one of his writings “Welcome to Cancerland.” In Meghan O’Rourke’s “reimagining” of chronic illness, “The Invisible Kingdom,” she echoes Sontag, describing feeling “locked 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 when talking about their own experiences of illness, and in the UK at least, slightly more often than healthcare professionals. The verbiage of the NHS surely bears some responsibility in this regard. According to a British collaboration of linguists with Sheila Payne, a leading expert on end-of-life care, providers used the euphemism only about 60 percent as often as patients.

I can half understand why some Reddit commenters consider these self-proclaimed travelers “narcissistic.” But if you want to call your own the experience of illness is a journey, I have no objection. Maybe this has a special personal meaning or relief for you, something that sounds like “this is all part of God’s plan.” Maybe it has an analgesic effect, like a painkiller that changes the brain’s perception of pain.

To each his own – but not that of others. As one person wrote, “No one who hasn’t had this experience can call it a journey.”

Peter A. Swenson is Professor Emeritus in the Department of Political Science at Yale University and author of “Trouble: a story of reform, reaction, and money in American medicine.”