The book fails to convey the severity of infection-associated chronic conditions, demands for treatment, or importance of infection prevention.
As a historian with a special interest in disability, I snapped up Emily Mendenhall’s new book, Invisible Illness, which promises a history of poorly understood chronic conditions.
Good histories of medicine are always transgressive, illuminating the politics behind treatments later seen as neutral science. With Secretary of Health and Human Services Robert F. Kennedy Jr. platforming “soft eugenics” and clinicians neglecting hard-won aerosol science, medicine needs more history.
Unfortunately, against a backdrop of historical overviews that correlate traumatic social events with outbreaks of mysterious ailments, Mendenhall’s thesis posits a mechanism for chronic illness based purely on pseudoscience. While ignoring infection prevention, the merits of pharmaceuticals, and leading biophysical theories around Long COVID and myalgic encephalomyelitis (ME), Mendenhall examines chronic illness interventions that can harm people with Long COVID and ME, such as graded exercise therapy (GET), cognitive behavioral therapy (CBT), and meditation.
Mendenhall, an anthropologist, theorizes that chronic illness happens when the “bodymind” is overwhelmed by trauma, pathogens, and pollutants. She writes, “It might be that for some people, a viral infection pushes them over a threshold into a corporal imbalance … However, the problem is never that one infection,” but also “our social histories, and traumatic experiences in particular.”
Though Mendenhall accurately acknowledges the harm of psychologizing illness, her thesis does exactly that.
The claim that people with infection-associated chronic conditions (IACC) would have acquired these disabilities no matter what stressor tipped them over the edge is a “pre-existing conditions” narrative. Eugenicists arguing that COVID-19 “only” kills the unhealthy, or that “only” unhealthy Palestinians can starve, rely on the same magical thinking about the invulnerability of “healthy” (that is, abled) bodies.
While certain factors increase risks, infections disable the able-bodied, too. Denying that fact means placing public health failures on the bodies of disabled people. Public health is off the hook if the problem is never one infection, but always, instead, “You’re kind of a hot mess.”
Though Mendenhall accurately acknowledges the harm of psychologizing illness, her thesis does exactly that.
Mendenhall actually positions her “threshold” theory as a challenge to medicine itself: “In medicine,” she writes, “there is a tendency to push toward clarity, pinpointing exactly what is driving a physical symptom so that it might be rectified.” She proposes we stop doing this in order to tell a more “holistic story” of illness.
One such holistic story the book offers centers on a nurse who “felt her health slipping away” after five SARS-CoV-2 infections but managed to restore it with “radical rest,” which entailed flying to a resort in Mexico for two weeks. “While planning this trip brought her spirits up, she realized that positive thinking and meditation were making her feel stronger.” She changed her diet to “close-to-the-ground type of eating,” did liver cleanses, went on some walks, and thus escaped Long COVID — a neat recovery narrative that avoids pinpointing infections as a rectifiable driver of ill health.
Societal investment in clean air never appears alongside Mendenhall’s endorsements of meditation, and the author refers to the ongoing COVID-19 pandemic in the past tense. According to “thresholds” theory, where pathogens can only ever be the straw that broke the camel’s back, jetting off on vacation is more crucial to good health than donning an N95 on the plane.
GET and CBT as treatments for ME are much better served by this thesis than is infection prevention. GET, based on the premise that people with ME are experiencing exercise-avoidant “deconditioning,” aims to gradually increase exercise levels, but has been shown to worsen symptoms. CBT involves changing distressing thoughts. Its use in treating ME and Long COVID reflects the premise that physical symptoms are either a direct manifestation of maladaptive beliefs, or the exercise-avoidant “deconditioning” caused by maladaptive beliefs. Both start with the incorrect theory that ME is caused by patients’ thoughts and behavior, rather than pathogens.
Mendenhall examines yet also minimizes patient concerns around these therapies. She explains that, among patients, “It is commonly accepted” that GET can harm those with post-exertional malaise “for a long, long time.” In the next sentence, she elaborates that a typical PEM crash is “perceived to immobilize someone … for days.” Days? Try weeks, months, or a permanent reduction in baseline.
Invisible Illness describes CBT as “moderately effective in reducing symptoms and disability in [ME]” and “critical” for patients’ mental health. The book documents controversy around the 2011 PACE trial, an infamously debunked study that purported to find CBT and GET were moderately effective for ME. But both therapies are ultimately vindicated in Mendenhall’s telling, which concludes by examining three (limited) reviews that found “no problems with the trial.” The decisions that led to the U.K.’s National Institute for Health and Care Excellence ending recommendation for GET and CBT as a treatment in 2021 are not discussed.
In a recent blog post, Mendenhall explains that after legal threats from psychiatrist and PACE trial leader Simon Wessely, she “pulled [her] most pointed critiques of his research” from the book. Yet she introduces the trial segment with a sympathetic personal portrait of Wessely. Patients critical of these therapies are meanwhile presented as a faceless mass, described as “infuriated,” “outraged,” and “responding in droves” that “vilified” psychiatrists.
Without interrogating whether the PACE study’s disabled critics would have preferred the government to spend £5 million ($6.8 million USD) and six years examining other interventions, we are left with the impression that some patients would rather tear down the only ME treatments available than give healing a try. Unexamined are the politics involved in authorities betting on patients performing free labor as the solution to their suffering, rather than betting on healthy people investing time, energy, and money into repurposing or developing medication.
Unexamined are the politics involved in authorities betting on patients performing free labor as the solution to their suffering, rather than betting on healthy people investing time, energy, and money into repurposing or developing medication.
But, then, Mendenhall side-eyes “biomedicine” and “quick fixes like pharmaceuticals.” To treat chronic illness, she instead advocates for “meditation, steam rooms, sound therapy and massage, strength training for small, subtle movements … a warm pool for reimagining what it feels like to move freely,” and space for sharing stories, offered in a building like a gym, but dimmer.
This ideal, of course, doesn’t factor in the existence of people who are bedbound, or whose ME is so severe that exposures to steam, sound, and subtle movements can cause crashes.
Although Mendenhall duly mentions Disability Justice and its commitment to centering the marginalized, she never seems to grasp the stakes for the most vulnerable among the groups she examines. After discussing functional neurological disorder (FND) as “the new neurasthenia or hysteria,” a diagnosis of which can stymie a patient’s medical journey, Mendenhall still waxes psychological in explaining why people with Long COVID might instead prefer a diagnosis of post-viral illness. Virus-caused illness is just a more satisfying narrative than FND, she posits, “because there is an explanation for their suffering, even if there might not be a cure.”
That the sickest patients’ survival may hinge on a cure, and that virology may provide it, is beside her point — for Mendenhall argues that recovery “is not about a cure.” The fact that recovery from Long COVID is rare means, in her view, that patients must stop chasing antidotes and focus instead on “reestablishing a new baseline and pace in life,” and “reimagining what a good life means.”
Invisible Illness thus depicts pacing as a practice in mindfulness through which patients are able to derive meaning from their lives. Erased are the people for whom pacing means survival, not catharsis. Erased are the people applying for medically assisted suicide because “a good life” isn’t compatible with physical torture, and death is easier to access.
Despite passing mention of people unhoused by Long COVID, for whom “the need for disability accommodations has become a matter of life and death,” Mendenhall selects quotes that erase death in ME and Long COVID communities. Long COVID and ME might “change how people live. ‘But they don’t die from it …’” Instead, they “disappear into their private, internal worlds at home” and “direct their efforts to nurturing their loved ones.”
In preserving this domesticating narrative, Invisible Illness elides those with ME and Long COVID who have died and are dying public deaths, remembered by communities grown feral with disabled wrath. It ignores the injustice of letting people die of preventable illness. It is a history that forgets, or never knew, the breathtaking, defiant courage of elders like Tinu Abayomi-Paul, Leslie Lee III, and Shafiqah Hudson. It imagines a world where no one ever shouted in the face of death: “I’m not going to be alone. And this won’t be considered a massive crime against humanity until we’re all gone. Just tell them I fought and tried.”
It imagines a world where no one ever shouted in the face of death: “I’m not going to be alone. And this won’t be considered a massive crime against humanity until we’re all gone. Just tell them I fought and tried.”
quoting Shafiqah Hudson
Shielding Cournoyer is a writer and historian working on a history of sexual abuse narratives in the United States.
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