My experience with life-changing illness began on a cold and rainy morning in 2014, when I woke up feeling feverish, foggy, and congested. As the weeks progressed and my flu-like illness lingered, I increasingly struggled to maneuver around a series of bizarre and ever-changing symptoms, including debilitating fatigue and fevers that came and went, skin lesions of various colors and textures, and searing nerve pain that pulsed along my left anterior side.
Frightened by my own bodily transformations as well as by my increasingly frustrating encounters with the medical system, I drifted toward the first-person accounts of mysterious, difficult to diagnose illnesses that had already become a staple feature of print and social media. Often written by white, professional-class women like myself, they described the authors’ attempts to navigate conditions like chronic fatigue syndrome, autoimmune disorders, or late-stage Lyme disease—all, curiously, characterized by the same suite of symptoms that I was suffering from. Inevitably, these stories followed a similar arc, in which the upward trajectory of an otherwise privileged life was suddenly stopped in its tracks by a disabling yet undiagnosable affliction. In each case, the moral of the story was also the same: individual doctors and the medical profession as a whole tend to disregard certain kinds of illnesses and certain kinds of voices—typically women’s—as was the author’s urgent plea for biomedical recognition.1
Amid this proliferation of narratives, it is worth considering what contemporary illness memoirs continue to offer readers, and what if anything they might be able to contribute to broader conversations about embodied suffering and healing. Two recent books written by authors with so-called autoimmune disorders are notable for their very different attempts to explore the limits of biomedical understandings of “health” and “disease.” Meghan O’Rourke’s book, The Invisible Kingdom, hews closer to established illness memoir conventions but stands out from the works of her predecessors by virtue of her literary prowess and her ability to convey the phenomenology of illness in ways that few writers can. By contrast, in On Learning to Heal; or, What Medicine Doesn’t Know, Ed Cohen poses deeper challenges to biomedical thinking, urging his readers to critically consider what happens when the medical encounter becomes a scientific one, and what is thereby lost in terms of other possibilities for embodiment and healing.
At a moment when questions of illness remain on the minds of so many, O’Rourke’s and Cohen’s books powerfully illuminate not only the suffering of illness but also its biomedical exacerbations. Yet neither author lingers upon the social and institutional dynamics by which diseases are shaped, diagnosed, treated, and lived. Neither book, in other words, fully considers the ways in which current social and political arrangements limit our opportunities for feeling better, whether we are trying to navigate health, illness, or the uncertain domain of experience in between.
In her new book, O’Rourke—an acclaimed memoirist, poet, and New York Times bestselling author—recounts her yearslong struggle with chronic illness and her increasingly desperate attempts to find medical relief.2 As in earlier work, she vividly describes what it feels like to not be able to access the care that she is seeking:
In pain, exhausted, and angry … I signed up for appointments, I waited, I got my hopes up, I went and sat in shoddy sad offices with pictures of sailboats on the wall and greasily thumbed magazines on side tables sourced from bulk office furniture suppliers. The actual encounter was always confusing, eleven minutes of liminal contact in which I tried to conduct myself in a way that would make the doctor like me, in the hope they would take some true interest in my plight. But their day was full of tests to order, bureaucracy to cut through, and education that taught them not to say, “I don’t know what’s wrong with you.” And so we stood together in a tiny antiseptic room, the doctor and the patient, a world apart.
Those who can identify with the double frustration of trying to manage both ongoing illness and the medical quest to resolve it will likely appreciate her accounts of these experiences, which she renders with poignancy and precision.
Noting the continuities between the gendered forms of chronic illness of the present era (now often presumed to be autoimmune in nature) and the plight of prior generations of suffering literary women (who were frequently dismissed as hysterics), she laments the ways in which women’s gender-specific ailments have been misunderstood, misdiagnosed, or relegated to the realm of the psychosomatic. “Over time, it becomes difficult to untangle the suffering from symptoms like pain from the suffering inflicted by the anxiety over the possibility of more pain,” O’Rourke writes. While acknowledging the empirical evidence behind mind-body connections in illness, she is adamant that her own suffering and that of others like her is “not just in the head.” As distinct from feminist-theoretical interventions that embrace the political possibilities afforded by a rethinking of the mind-body divide entirely, for O’Rourke, “mind” and “body” remain separate entities.3
O’Rourke’s and Cohen’s books powerfully illuminate not only the suffering of illness but also its biomedical exacerbations.
And indeed, a key objective for O’Rourke is to bring her mind and her body into a more peaceable coexistence: “to the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity,” she insists. And yet the multiple diagnoses O’Rourke does eventually receive serve as important narrative crescendos in her tale, particularly two thirds of the way through her book, when she is exuberant after undergoing a successful treatment for late-stage Lyme disease and also becomes a mother. Conversely, there are a number of other diagnoses that medical professionals offer to her at various junctures (including lupus and autoimmune thyroiditis) that do not bring her the same solace, perhaps because the treatments that accompany them do so little to alleviate her symptoms. While aware of and acknowledging the limitations of diagnosis, she persistently craves it as a form of social recognition. She laments that “instead of acknowledging what was wrong with me, the medical system asked my body to behave as the obedient container of a distinctive and previously understood disease.” Yet she herself persists in searching for the “right” diagnosis, hoping that it might be accompanied by an effective and definitive cure.
Despite a desperation so deep that it drives her to seek out alternative remedies for her ailments, including fecal transplants in distant clinics and ultraviolet irradiation therapies, O’Rourke continues to believe not just in the value of diagnosis but also in the overall promise of biomedicine. According to O’Rourke, conditions such as posttreatment Lyme disease, autoimmunity, chronic fatigue syndrome, and long COVID are the prototypical diseases of our era, “the messy reality shaped by both infection and genetics and our whole social history, a reality that no one yet fully understands.” With the impulses of a reformer rather than a radical critic, she clings to the idea of science as progress but yearns for its practitioners to be more forthcoming about the domains over which they have not yet achieved mastery.
Given her hopefulness about a biomedical path forward, O’Rourke is able to find inspiration in institutions like the Pittsburgh-based Autoimmunity Institute, which, according to its directors, offers a new approach to autoimmune disease via in-depth appointments with doctors across multiple disciplines and a “streamlined coordination of care.” She is also encouraged by the recent emergence of long COVID clinics at academic medical centers across the country, some of which she visited while conducting research for the book. Although there is still no recognized treatment for long COVID and very little is understood about the condition, what she most appreciates about these clinics is that “there is no algorithm.” Instead, “there is listening to your patient.” For O’Rourke, these spaces seem to embody her yearning for a kinder, gentler version of biomedicine, in which the institutions of legitimate, masculinist science are nuanced and softened by feminine empathy. Seeking to bridge these two fantasies of wholeness and connection, her story ends with her joyfully beholding her infant son while imagining the well-functioning immune system that allows him to thrive.
Whereas O’Rourke’s quest carries her from doctor to doctor in search of the right diagnosis, Cohen’s book reverses the narrative arc. He begins his story at age thirteen, when as a chronically ill child he was first diagnosed with Crohn’s disease. While acknowledging the lifesaving interventions that Western medicine can offer, his quest quickly carries him away from biomedical modes of thinking and toward the healing potential of alternative mind-body therapies. O’Rourke pleads for a better version of bioscience; Cohen wants us to recognize that there are many conditions that Western medicine will never be able to adequately perceive or treat, urging us to look elsewhere for our remedies. The chief intent of On Learning to Heal, as Cohen describes it, is to recount how he found freedom from clinical diagnosis and came to “embrace healing … rather than disease” as his ultimate destiny.
Cohen builds off of his own important scholarship in this regard. His previous book, A Body Worth Defending, provided a detailed genealogy of the concept of the immune system, an idea indebted to the gradual migration of notions of “immunity” from the fields of law and governance into the terrain of biomedicine.4 Cohen’s conclusion to that book advocated for a turn away from ideals of immunity (premised upon understandings of the body-as-fortress, in need of self-defense) to those of community, in which our coexistence with other living creatures is what is most pivotal to our survival and thriving.
In his new book he offers up the genealogy of an absence: contemporary medicine’s indifference to healing. “How and why did medicine, and especially medical training, forget that healing matters?” he wonders. As medicine became “more like a science and less like an art,” the value of healing was “radically diminished in favor of concepts like treatment and cure.” Building upon insights afforded by a remarkably interdisciplinary set of textual influences—including Foucault, psychoanalysis, continental philosophy, Zen Buddhism, and many different strands of New Age thinking—Cohen attempts to demonstrate both the historical erasure and the ultimate value of the notion of healing. His efforts to reclaim it, he explains, are what eventually allowed him to rebuild his own life.
Cohen defines healing in straightforward terms as the cultivation of “a capacity for living in more life-enhancing ways.” A self-described vitalist, he believes that all bodies have an intrinsic capacity to heal, and that this potential inheres in us by virtue of our status as living beings. “At a fundamental level, healing names an essential reparative capability that all organisms, including trees and humans, need to realize in order to go on living,” he writes. While biomedicine aspires to the mythic ideal of cure, in practice it is far more adept at managing disease, particularly those diseases that are deemed to be chronic. By contrast,
Healing desires something else. Healing does not ask: How can I get rid of this disease? Or, if not get rid of it, at least how can I “control” it? Rather, healing wonders: What can I learn from this disruptive-yet-vital experience … Can I become myself more intensely and gracefully through this process, and if so, how? Can I learn to live otherwise? To live better?
The seeds for Cohen’s own experiences of healing are planted at the outset of his story. While a graduate student at Stanford, he experiences a life-threatening medical crisis related to his illness and must undergo a lengthy period of hospitalization. Though his doctors tell him clearly that the best hope for his life is to medically manage his symptoms, one evening, while making his way through the woods, he hears the trees tell him that he might instead find new ways to live: “None of my myriad medical encounters had prepared me for this epiphany … In fact, healing never figured into the picture my doctors sketched for me about the probable trajectory of my disease’s progression.” From this point onward, Cohen’s narrative develops around the gradual unraveling of his obeyance to biomedical authority and a deepening awareness of its intrinsic limitations.
For Cohen, it is not Western medicine but rather a series of gifted mind-body healers who eventually come to his rescue, inverting the classic lament of the illness memoir in which the sufferer is “psychologized” rather than having their sickness taken seriously. Naomi, the first such figure he encounters, is a “recovering physician” who herself has been living with Crohn’s disease for almost thirty years. Having left her position as a pediatric endocrinologist at the Stanford Medical Center, she now practices mind-body medicine on a houseboat in Marin. Naomi proves to be pivotal in helping him to transition away from conventional epistemological frameworks and treatment regimes: “I needed the support and encouragement of others who had also negotiated the clinical model and lived to tell the tale,” he explains. The later chapters of his book describe the different teachers he encounters in his newfound pursuit of healing, including an array of psychotherapists and Feldenkrais, tai chi, and breath work practitioners.
Might an entirely new model of medicine emerge if research trajectories were community controlled rather than profit driven?
Notably, as Cohen delves deeper into his healing journey, he does not describe the concrete effects of these practices on his Crohn’s symptoms, focusing instead upon other aspects of his embodied experience, such as mind-body integration and the development of new energetic pathways. As a queer man from a secular Jewish family with Marxist leanings, Cohen is also acutely attuned to the importance of the collective in healing, and cherishes his experiences of “transindividuation” during group-oriented healing retreats. As Cohen describes these, “we could melt, dissolve, and perhaps resolve some of the psychic and somatic tensions … in order to ameliorate problems and anxieties that remained unresolvable on our own.” He is also convinced that the implications of these healing practices, in which the possessive individualist ideal of “having a body” is challenged, are fundamentally anticapitalist and political.
Given his broad array of transformative commitments, there is one surprising omission in the unique and astute commentary on illness that Cohen offers to his readers: the capitalist commodification of healing itself. While he acknowledges some of the forms of economic and social privilege that make his coastal California healing workshops possible, he seems less attuned to the ways in which the neoliberal ethos of wellness has increasingly come to incorporate many of the same healing practices he now celebrates—including at mainstream medical centers like the Stanford University hospital where he was first treated. This evolution makes his concluding proposition to reanimate abandoned healing traditions as a complement to biomedical discourse feel disappointingly tepid. “I am trying to suggest that acknowledging ambiguity as a viable therapeutic attitude does not undermine modern medicine’s efficacy but might even enhance its capacity to value healing as part of its practice,” he suggests. His final prescription for institutional healing is thus not entirely different from O’Rourke’s call for a less self-assured and more empathetic version of Western medicine, even if it is unexpected, given the more robust challenges he poses earlier in the text.
Are there conditions that are impossible to heal from, including in Cohen’s generous and carefully considered terms? Cohen himself acknowledges that at a certain point while living in San Francisco during the early years of the AIDS epidemic, it became difficult for him to continue his volunteer work with HIV patients because most of the young men at the hospice recognized that they were condemned to certain death. In the United States, three and a half years into the COVID-19 pandemic and in the wake of over a million fatalities, the CDC has estimated that at least 7.5 percent of the population has become seriously debilitated by the lingering effects of long COVID.5
I have improved significantly since the onset of my illness nearly a decade ago, but like O’Rourke (who confesses in the final pages of her book that she is “still sick”), I am not entirely “better” either, in the conventional sense of the word. The profound geopolitical unevenness around expectations of physical well-being poses yet another challenge to our imaginations of illness and healing. As the theorist Jasbir Puar has observed, much of what the privileged West calls disability is normative, not exceptional, when viewed from the perspective of the Global South (highlighting the implicitly privileged perspective of most memoirists). Puar urges us to treat disability not as “another hindrance to social mobility that must be resolved” but as “a facet of life that might tell us something about failures of how time and labor and space are organized.”6
Both O’Rourke and Cohen advocate learning to live with illness rather than being solely focused on overcoming it, but they only briefly take up the question of what would be socially and politically required to enable us to thrive along the way. Nor does either author seriously engage with the political economy of biomedicine and its profit-driven imperatives—such as the ways in which they shape both diagnosis and treatment—or with the social determinants of health and illness more generally. While Cohen acknowledges the need for greater access to healing and O’Rourke calls for a social order in which health care is a human right and the sick can live with dignity, an important supplement to the illness memoir form would no doubt be a close consideration of the social transformations necessary to better support relations of care. Some inspiration in this regard can indeed be found in the so-called postpandemic landscape, not in its long COVID clinics but rather in the heightened attention to mutual aid and in real world efforts to build a “feminist commons” via practices like community fridges and “podding.”7 Ideas could also be found in the contributions of disability scholars and activists who have resisted calls for a “return to normal” premised upon bodily norms of efficient productivity.8
What might the affects and infrastructures of such a world look like and feel like for people in differently embodied states? Might an entirely new model of medicine emerge if research trajectories were community controlled rather than profit driven? While most illness narratives still center the struggles of a singular, suffering protagonist, to imagine the answers to these questions, and the political ideals we would need to bring about such transformations, would be a healing intervention indeed.
- The writer Lidija Hass has glossed this genre as one of “suffering women and disbelieving experts” (“Memoirs of Disease and Disbelief,” the New Yorker, May 28, 2018). ↩
- See also Meghan O’Rourke, “What’s Wrong with Me?” the New Yorker, August 26, 2013 and “Lyme Disease Is Baffling, Even to Experts,” The Atlantic, September 2019. ↩
- See, e.g., Elizabeth Wilson, Gut Feminism (Duke University Press, 2015). ↩
- Ed Cohen, A Body Worth Defending: Immunity, Biopolitics, and the Apotheosis of the Modern Body (Duke University Press, 2009). ↩
- National Center for Health Statistics, “Nearly One in Five American Adults Who Have Had COVID-19 Still Have ‘Long COVID,’” June 22, 2022. ↩
- Jasbir Puar, The Right to Maim: Disability, Capacity, Debility (Duke University Press, 2017). ↩
- Miriam Ticktin, “Building a Feminist Commons in the Time of COVID-19,” Signs: Journal of Women in Culture and Society, vol. 47, no. 1 (2021). ↩
- See Emily Krebs, “A Sour Taste of Sick Chronicity: Pandemic Time and the Violence of ‘Returning to Normal,’” Communication and Critical/Cultural Studies, vol. 19, no. 2 (2022), pp. 119–26. ↩