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Leslie Jamison. The Empathy Exams. Minneapolis: Graywolf Press, 2014.
Leslie Jamison. The Recovering: Intoxication and its Aftermaths. New York: Little Brown, 2018.
Porochista Khakpour. Sick: A Memoir. New York: Harper Perennial, 2018.
Abby Norman. Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain. New York: Bold Type Books, 2018.
Julie Rehmeyer. Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. New York: Rodale Books, 2017.
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“[F]earing the worst is worse than knowing the worst,” Leslie Jamison writes in her essay “The Devil’s Bait,” which follows Jamison through a weekend conference with a group of people who have been diagnosed—largely self-diagnosed—with a rare, understudied skin disease called Morgellons. “Until the worst happens, it always might happen,” Jamison continues. “When it actually does happen? Now, at least, you know” (34). Morgellons disease, characterized by fiber-like pieces appearing in and on the skin, suggests for Jamison a tangled web of possibilities, all of which trouble the purportedly clear dichotomies between true/false, reality/perception, and self/other as patients navigate a disease that medical professionals, on the whole, ignore. At the conference—which Jamison attends as an observer, rather than as a participant—she witnesses the ongoing and lonely space in which Morgellons patients are sequestered, waiting for some defining moment that either cures them or recognizes them as people—suffering, in the world—and not as numbers or pathographies or potential psychiatric cases.
In the absence of these two desired outcomes, the people Jamison meets are instead left saddled with a variety of fears about the validity of their bodily states, their place in an ever-shrinking world whose contours are defined by their illness, and their relationship with others. In response, Jamison asserts that this experience of feeling out of place in one’s body is paradoxically both universal and singular. And yet, as Jamison is quick to note, folding the experience of Morgellons disease into an extended metaphor about a “wrongness in my being” (Jamison’s words here) is, at its root, “an act of violence—an argument against the bodily reality its patients insist upon” (32).
It is this idea of “bodily reality” that creates a community among those with Morgellons, even as they disagree about the source of the illness, its range of symptoms, and its treatments. It is also primarily the somatic experience that pervades discussion at the conference; Jamison continually notes the shadowy scars and scabs that conference participants mention or show her. And yet, regardless of the bodily status of Morgellons, there is—as in all illness—a psychological component at play. It is in the dual understanding of illness as bodily and mentally configured, Jamison implies, that we can create new kinds of medical knowledge.
With this understanding in mind, I turn to a selection of recent illness memoirs which investigate and trouble the intersection of mind and body in illness, and which raise questions about contemporary medical practice and its attendant failures. Notably, these memoirs each approach a different illness, each with a different social consciousness and set of challenges. First is Julie Rehmeyer’s Through the Shadowlands; Rehmeyer is a science writer whose reliance on reliable scientific research creates skepticism about the very illness she believes she has: ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome. Like Rehmeyer, Abby Norman in Ask Me About My Uterus portrays her dedication to becoming both an advocate and scientific expert as she fights for recognition of her own illness, endometriosis. Meanwhile, Porochista Khakpour’s Sick and Leslie Jamison’s The Recovering similarly outline the fragmented timeline that represents an experience with chronic illness. Khakpour traces the extended, complicated experience of diagnosis and treatment for her late-stage Lyme disease while Jamison examines the halting movements forward and back as she comes to terms with her alcoholism.
These memoirs are part of a larger, expanding movement in non-fiction that attempts to represent the individual experience of illness. Earlier texts such as Audre Lorde’s The Cancer Journals (1980), Susanna Kaysen’s Girl, Interrupted (1994), and Kay Redfield Jamison’s An Unquiet Mind: A Memoir of Moods and Madness (1997), made crucial contributions in defining this genre. In addition, many recent illness memoirs have reached a wide popular readership, such as Susannah Cahalan’s Brain on Fire: My Month of Madness (2013) and Paul Kalanithi’s When Breath Becomes Air (2016), both of which spent over a year on The New York Times nonfiction bestseller list.
Notably, as I considered these and other recent titles—Cory Taylor’s Dying: A Memoir (2016), Nina Riggs’s The Bright Hour (2017), Terese Marie Mailhot’s Heart Berries (2018), and Esmé Weijun Wang’s The Collected Schizophrenias (2019)—it became clear that this is a field dominated by women writers. The data supports this prevalence; many illnesses—such as multiple sclerosis, lupus, Lyme disease, fibromyalgia, and chronic fatigue syndrome—disproportionately affect women. And, in the books I examine here, gender becomes an important consideration. The authors detail how their symptoms and experiences are downplayed because they are women (Norman), reflect on the privileges they receive as white middle-class women (Jamison), and challenge the way in which illness reinforces cultural preferences for a pale, frail, suffering version of a woman (Khakpour).
In what follows, I examine how the object of the text becomes a way to traverse these personal stories of illness. First, I explore the paranoia, denial, and frustration that accompanies the early stages of illness, as these writers struggle to be taken seriously, receive a diagnosis, or address their symptoms. In so doing, these writers navigate the mind/body dynamics of illness while calling on varying networks of care. No illness occurs in a void, and these narratives explain the ways in which lifelines are thrown out from diverse and often-surprising sources: long-standing theories or frameworks for illness, others who are sick, and various friends, partners, and family members. In constructing these networks, the space of the memoir also gives us new ways to consider the experience of illness in time, and the role of storytelling in a culture obsessed with quick fixes and Instagram cure-alls.
Navigating the Mind-Body Connection
In her essay on Morgellons, Jamison notes the frustration that those with the illness have at the familiar suggestion that their disease is “all in their heads,” while also acknowledging the complicated ways in which having a psychological experience does not preclude the possibility of somatic symptoms. In Ask Me About My Uterus, Norman notes that her early attempts to have her endometriosis recognized led to a continual shifting in emphasis from physical symptoms to psychological: “[A] lot of people in my life—doctors, psychologists, others—left me feeling responsible,” Norman writes. “[Implying that] I was frigid, tense, too stressed, too smart for my own good, didn’t have enough fun. Was I searching for an identity in disease? Trying to avoid sex? Fearful of intimacy? Desperate for attention?” (46). In fact, it is only when Norman’s physical symptoms affect another person—namely her boyfriend, and their sex life—that doctors take these symptoms as physical, rather than emotional or psychological. “Becoming a disappointment to a man, though, seemed to do the trick,” Norman states bluntly (165).
There is also the ongoing fear—after years of hearing so from doctors, family, and well-meaning friends—that the symptoms of pain are psychological. Norman’s own representations of her illness and her extensive research are often doubted: “I was the primary source of data for the investigation into my condition, and yet it often felt like the data I presented was questioned by others as unreliable. Thus, I questioned myself” (193). For Khakpour, who struggled to get a diagnosis for her late-stage Lyme disease, the possibility of a psychological illness rather than a somatic one is further complicated by other underlying conditions. “I was a drug addict then,” she explains in Sick, “[a] huge insomniac. I was depressed and anxious. I always thought there was something physical at the root of it, but no one had found it, so I was resigned to thinking it had been created in the mind. I was okay with it even. I was, after all, someone who created in the mind” (124). Khakpour also notes the tendency of women to be treated first for psychiatric illness before their physical symptoms are taken seriously (166).
In some of these texts, there is also a fear of mental illness, a stated preference for something “wrong” with the body, rather than the mind. In Through the Shadowlands, Rehmeyer, whose science-oriented training made her skeptical of her own chronic fatigue syndrome, suggests that the scientific community marginalizes those with the illness through associations with mental illness: “[T]he whole thing was becoming a circus that only deepened the impression that some contagious craziness was seeping out of the pores of ME/CFS patients and tainting anyone who touched them,” Rehmeyer writes (115). At times, this marginalization also suggests that Rehmeyer, too, prefers the notion of a physical illness over a mental one: “[N]o one outside the ME/CFS community seemed to feel much threatened by the disease, thanks in part to all the psychobabbling research suggesting we were just crazy people,” she claims (219). Norman also writes about these fears, suggesting that the compound toll of a mental and physical illness was too taxing:
I’d slowly been coming to terms with the limitations of my physical body. I’d accepted that I could no longer dance, have sex, or eat food that wasn’t basically a slight variation on bland. I’d figured I’d be okay because I could still think, and plan, and dream. I have a vivid imagination and can weave stories. I can bring a narrative to life within my mind that can entertain me the way that my own life, at times, can no longer. The thought of losing my mind was too much. (228)
Norman sees the psychological effects as part of totalizing illness, a connection that others make as well. And in The Recovering, Jamison links the proliferation of the physical act of drinking to psychological experiences, writing that “[w]hen I started to drink, to really drink, to become conscious as my drinking not just in terms of pleasure but escape, I was ashamed, but also proud. My urgent attempts to disappear from myself suggested there was something dark and important—depression, neurosis, psychic complexity—that required disappearing from” (69). For Jamison, as evidenced in her desire for “something dark and important,” having an interior or mental underpinning to her illness gave it a kind of validity, what she describes as “an aesthetic purpose.”
What then begins as frustration that a physical illness is being reinscribed by doctors and other caretakers as “all in your head”—a psychological imagining—becomes for many a realization that mental and physical effects are inextricably linked. When Khakpour begins to worry that Trump-era headlines are contributing to her ill health, she prods at this link:
When I feel myself getting sicker as a result of the news, a part of me panics—is this just psychological? Was it just PTSD all along? Were some of those early doctors right, the ones who just thought I was crazy? How could my body erupt in a chaos of spirochetes each time my mind and body suffers? How does that work? And yet we continue to find evidence of the mind and body connection. (167)
Here Khakpour suggests how others view psychological states, qualifying her statements repeatedly: “just psychological,” “just PTSD.” She also insinuates a pathologized version of mental illness—“thought I was crazy”—as Rehmeyer does above, but also reclaims it, noting in closing the interconnectedness of mind and body. Norman, too, suggests that her fear of psychological effects develops into a realization that the mind-body connection is intrinsic to illness: “All those years of doctors telling me it was ‘all in my head,’ or that my illness was ‘just nerves,’” she writes, “seemed to have manifested itself physiologically: I did have neurological deficits, and I did have demonstrable nerve damage” (239).
When Jamison begins the process of recovery, her own interior states manifest themselves not as something “dark and important,” but rather a paranoia about her body, her health, and her relationship with others. At one point, still newly sober, she heads to a month-long writing residency that she’s heard described as “a messy swirl of debauchery—infidelities and drunken rambles through the woods” (243). While there, she lies in bed at night, listening to others talking and drinking, “ashamed of my prim, ascetic life without booze,” and noting that “I hadn’t felt this far outside the world of others since junior high” (245). Her anxiety spills over to other thoughts as well: “I was deeply sober, deeply stymied, and deeply worried about deer ticks, terrified of catching Lyme disease” (245). When she finds a tick on her leg after a run, she heads to a nearby clinic to get antibiotics. But even this paranoia about her health “didn’t feel compelling […] I was just a chronic hypochondriac who’d been right a very small but unforgettable number of times” (246). The idea of “hypochondria” itself suggests the imbrication of mind and body, an anxiety about illness that manifests itself via somatic symptoms. Unlike the romanticized versions of interiority that appeal to Jamison initially, giving her illness “aesthetic purpose,” the anxiety she feels here is distancing, ostracizing. After returning from the residency, she plans out what she’ll tell her boyfriend: “It was good to stop drinking for a while, I’d say. But I think I’m ready to start” (246).
Telling the Story of (My) Illness
As these memoirs suggest, the dynamic between mind and body is both complicated and ongoing. Part of the frustration of being told that one has imagined an illness is the accompanying rending of psychological experience from physical experience, which reduces someone to either (rather than both) and tells an incomplete version of the story. I want to think about the way that these narratives get along—that is, the way in which they tell their own stories.
One major aspect of the mind-body connections that I’ve already explored is time; these memoirs describe the long processes of illness in ways that range from the chronological to the fragmentary. Although Norman tells her story in a roughly chronological way, she frames the book with an “Author’s Note” and an “Epilogue,” both of which suggest that the tale contained in the book is not the complete story but rather an ongoing experience. Khakpour decenters illness in her book’s organization, titling the chapters after cities she’s lived in rather than a timeline of her illness, a move that maps onto her Lyme disease itself: “I would be destined never to find the bite on the location of my body, just as I’d be destined never to know the location I was in when bit by the tick. The question of where would be the most mysterious of all” (165). Rehmeyer’s text jumps back and forth in time, opening with a dramatic scene in which Rehmeyer travels alone to Death Valley, living in a tent to test a theory that mold exposure is causing her chronic fatigue syndrome. Jamison’s book intersperses research from her Ph.D. dissertation with her own story, and although the book is arranged in a generally chronological manner, we lose the threads in the midst of all this information. Jamison’s book is over 500 pages, and the slowly accumulating story—in which we often feel unmoored, adrift—suggests the long durations of her illness.
These memoirs are also in conversation with a wide network of other texts, and readers will likely be familiar with references made to writers like Susan Sontag and Virginia Woolf, both of whom have written about illness. Norman’s “Prologue” opens with a quote from Sontag’s Illness as Metaphor, a text Jamison also references: “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick” (1). Rehmeyer also picks up on this resonance, claiming that she’s “continued to claim my citizenship in the land of science” (248), while Khakpour quotes from Woolf’s long essay, On Being Ill.
This relationship to other writers also suggests an interest in writing as craft; all four of these writers are writers as such, and have published widely in addition to their memoirs. Perhaps, then, that explains the attention to the story itself—that is, the process of telling a tale, and an awareness of audience and form. Rehmeyer describes how she thought of her illness in terms of a “story,” a kind of litmus test for her own sense of validity:
I was struck by the key role a “good story” had in my decision making. Go to the desert for a while, retreat from society, have an adventure even while goddamn fucking sick: Nice story, I’ll take it. Conceive of the world as toxic and dangerous, see myself as unusually sensitive and susceptible, be constantly vigilant for (real or imagined) contamination: lousy story, obviously ridiculous.” (131-132)
Khakpour, meanwhile, writes about how susceptible she was to the imposed narratives of others; for her, it was the repeated intimation from doctors that Lyme disease was a bottomless hole of inquiry that she should avoid at all costs. “Over and over [my doctor] dissuaded me from the Lyme investigation path. Don’t go there; people spend their entire lives stuck in that one, and it’s the one thing he said that felt completely true to me. You need to stay in LA to get well” (203). Jamison likewise focuses on the narratives that others tell about illness, writing:
When it comes to addiction, the abstraction of privilege is ultimately a question about what type of story gets told about your body […] [My pain] owed its existence to narratives that made it very possible for a white girl to hurt: stories that suggested her pain was interesting; that it was proof of vulnerability rather than guilt, worthy of sympathy rather than punishment (68).
For Jamison, the very process of writing the memoir becomes a way of questioning stereotypes about whose pain is valid, whose illness worth narrating, whose story worth telling. This view also challenges us as readers. Why do we pick up a book that narrates someone else’s pain and suffering? At one point, Jamison worries that she is reading literature on addiction for the wrong reasons, “wanting the train wreck.” Instead, she claims, “I was supposed to be rooting for the underdog story” (299). The potential problem of the voyeuristic reader does not diminish the importance of these personal narratives, however. As Jamison contemplates in her essay on Morgellons: “How do I inhabit someone’s pain without inhabiting their particular understanding of that pain?” (39-40). These books point the way forward.
Feeling Toward the Future
“These demons belong to all of us: an obsession with our boundaries and visible shapes, a fear of invasion or contamination, an understanding of ourselves as perpetually misunderstood. But doesn’t this search for meaning obfuscate the illness itself? It’s another kind of bait, another tied-and-painted fly: the notion that if we understand something well enough, we can make it go away.”
Leslie Jamison, “The Devil’s Bait” (55)
Our fear of illness—of “invasion” and “contamination”—often drives us forward, united, toward a common goal: a cure. Funding drives and awareness campaigns for various illnesses and diseases tout this language: Race for a Cure, Fight for a Cure, Dance for a Cure. Although the authors I’ve considered would likely welcome a cure for their illness—chronic fatigue, Lyme disease, endometriosis, alcoholism—their emphasis is on awareness. In documenting their struggles to have their pain taken seriously, their symptoms acknowledged, and their illnesses validated, these writers have also suggested more major gaps in our already-compromised structures of health and care. They question the way we respond to women and their bodies (Norman), the ways we discuss illnesses we don’t understand and that science refuses to study (Rehmeyer and Khakpour), and the ways we villainize certain bodies while sympathizing with others (Jamison). These books also criticize the way we compartmentalize the experiences of illness, delegating focus to either body or mind.
In refusing to accept the status quo, these texts also drive forward our critical conversations about understudied or neglected illnesses. Major advances have been made in the study of some of these illnesses, but much work remains to be done. And yet, tracking the timeline of these memoirs—all of which unfold over years, rather than days or months—shows us that some progress has been made. Jamison’s essay on Morgellons, for instance, was first published in Harper’s Magazine in 2013; a 2018 review of the Morgellons literature suggests that clinical studies which propose that Morgellons is “exclusively delusional in origin” have “considerable methodological flaws” and “neglect the fact that mental disorders can result from underlying somatic illness.” 1 The stories of these illnesses that lie outside of the mainstream—or, in the case of alcoholism, an illness that is so common that it is effectively ignored—are case studies for a healthcare system that answers to profit, not people. These memoirs are part of a larger constellation of illness-related texts that show the human costs of ignoring pain. In our current moment, these books are required reading for understanding the healthcare system we’re in while advocating for change.
Endnotes
- Middelveen, Marianne J., Melissa C. Fesler, and Raphael B. Stricker. “History of Morgellons disease: from delusion to definition.” Clinical, Cosmetic and Investigational Dermatology 11 (2018): 71-90.
Sarah Nance