What is writing about sickness for? In
the 1990s, Anne Hunsaker Hawkins, a professor of humanities at Penn State,
undertook a study of what at the time was a new, and burgeoning, genre:
illness memoirs. Before 1950, book-length personal accounts of
illness were uncommon, she noted; before 1900, almost unheard of. But by 1999, they were
abundant. That year, Hawkins counted some 60 memoirs of breast cancer alone.
Gilda Radner’s It’s
Always Something,
a 1991 memoir about the actress’s experience of ovarian cancer, had recently
been on the bestseller list. She tallied new books about heart disease, cancer, HIV/AIDS, and neurological disease, and categorized them by their “organizing
myth”—was sickness in these books a journey, or a battle, or a death and
rebirth?
Hawkins focused on how these myths and metaphors, which often offer redemption of some kind, could be useful to the sick person. Illness memoirs, she wrote, “offer us a disquieting glimpse of what it is like to live in the absence of order and coherence”; in response, their authors attempt “to restore to reality its lost coherence and to discover, or create, a meaning that can bind it together again.” Her view was a riposte, in part, to Susan Sontag’s Illness as Metaphor, in which the writer argues that the metaphors we attach to illness tend only to further burden the patient. (Ironic, then, that Sontag’s book is most frequently quoted for her extended metaphor of illness as an “onerous citizenship” that admits holders to “the kingdom of the sick”—a passage so often cited as to have become its own cliché.) Above all, Hawkins recognized that patients were trying to wrest some control over their stories from the anguish of illness and its treatments, which are often as traumatic as the disease itself. Also in the 1990s, Arthur W. Frank, a sociologist who had written his own memoir about heart disease and cancer, divided illness memoirs into three kinds: restitution, in which the person returns to a previous state of health; chaos, in which all life events are contingent and no one is in control; and quest, in which illness is seen as a spiritual journey.
As these categories, especially of restitution and spiritual gain, became more standardized, readers and critics began to find them frustrating or alienating. What if illness doesn’t result in a net positive gain of perspective and capacity for contentment but a gaping wound in your sense of self or the narrative of your life? In Beyond Words: Illness and the Limits of Expression, published in 2007, Kathlyn Conway, a psychotherapist in New York (whom I know personally), rejects the “standard survivor literature” with its emphasis on successes and triumphs—the cancer patient who competes in triathlons while receiving chemotherapy or the survivor who has found spiritual peace and improvement. She questions whether suffering and survival necessarily make one a better or wiser person and instead searches for writers who grope for language that adequately expresses the terror and disintegration of self that comes with serious illness. In her own memoir, Ordinary Life, she wrote about being treated three times for cancer, and remarks in the afterword on how shocked she still is to confront the angry, difficult, depressed woman she was during treatment, whom she depicts in her book. As Conway writes, “It’s not simply that people have a different experience of self,” when it comes to illness, “but that they acquire an identity they do not want and probably do not like.”
This questioning, rather than questing, strain has become more pronounced in the genre, and many contemporary illness narratives take a more elliptical form as they reject a clear arc of meaning. Sarah Manguso’s Two Kinds of Decay (2008), Siri Hustvedt’s The Shaking Woman or a History of My Nerves (2010), Porochista Khakpour’s Sick (2018), and Anne Boyer’s The Undying (2019), for a few examples, all play with form and question the utility of a linear story with a definite conclusion. This makes Tessa Miller’s new book, What Doesn’t Kill You: A Life With Chronic Illness, a bit of a throwback. A memoir of being diagnosed and living with Crohn’s disease, Miller’s book offers a didactic narrative, in Hawkins’s taxonomy, or a questing one, in Frank’s. Hers is one of triumph, if not restitution.
Tessa Miller really wants to help. A tightly-wound achiever, “I’d planned for everything,” she writes in the book’s early pages. “I signed up for every high school extracurricular, graduated at the top of my class, stayed out of trouble (for the most part), made it out of my little farm town, did four years at Northwestern, moved to New York, secured a full-time job with a 401(k), and paid my student loans on time.” But in her twenties, her body forced her to relinquish control. At 23, on the eve of a triumphant Thanksgiving homecoming, she began to experience extraordinary pain. “My guts were being pulled like taffy and shredded with hot razor blades,” she writes. She spends the night circling from bed to toilet. She makes her flight, only to find that, at her mother’s house, her condition worsens. She watches her toilet bowl fill with mucus mixed with clotted blood and intestinal tissue—“what looked like pulpy red juice.” Miller goes to the E.R. At 24, she is diagnosed with Crohn’s disease, a form of inflammatory bowel disease that has no cure. It can only be managed, at best, through a range of medications and other treatments of varying effectiveness. Several more hospitalizations follow, some lasting months as, in addition to her chronic disease, she battles a recalcitrant bacterial infection hiding in the scarred folds of her damaged colon. At times, she is convinced that she will not survive.
Miller presents her first experience with Crohn’s as an expression of good faith to her readers. She’s willing to be vulnerable, revealing many painful episodes in her life, from the hopeless moments of her illness to the other traumas that haunt her: her parents’ abusive marriage, her father’s alcoholism, a sexual assault by a family member, and her abusive long-term relationship with an addict. That she is willing to admit that she never leaves home without spare underwear contributes to gaining her reader’s trust: She is not trying to paper over her illness’s indignities.
Instead, Miller attempts to convert the ugliness and pain of her experience into something useful—for herself, but also for others. She makes clear that she never expects to get better—the title she originally considered for the book was “Sick Forever”—and she details the medications, side effects, procedures, and fecal transplants that the disease brings. But she recovers her equilibrium quickly, at least on the page. “I became a professional patient, and a good one,” she writes.
I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life.
That change, and coping with it, may be an ongoing, fluid process, but from the beginning, Miller projects a sense of resolution. The form of the book presupposes this redemption: Each chapter begins with an episode from Miller’s life, then segues into the lessons she drew from it. What Doesn’t Kill You reads, at times, like a manual, offering bullet-pointed suggestions and definitions. Though Miller’s experience is with Crohn’s disease, she addresses her book to all sufferers of chronic illness. She gives advice on how to advocate for the best care, how to communicate your needs and set boundaries, and how to readjust your new identity as the sufferer of a chronic illness. She’s a strong believer in therapy and support groups. In a direct, conversational, by turns righteous and joking style, she lays out her suggestions and offers resources (how to find a good therapist, what to do in the event of wrongful termination), and tries to validate the broad spectrum of loss and grief that many who encounter illness feel.
In the United States, sufferers of illnesses as disparate as Crohn’s disease and migraine have more in common than they might elsewhere in the world: They each have to navigate an extortionate, elaborate, and emotionally draining private health care system. Miller connects her own experience to the American health care industry as a whole, from a several-billion-dollar wellness industry peddling dubious cures and therapies to a medical system in which doctors typically give their patients 11 seconds to explain their symptoms before they interrupt them. “This book isn’t about the American health-care system and it’s entirely about the American health-care system,” she says, and she demonstrates all the ways that system isn’t set up to accommodate people who are unwell: insurance companies denying treatment without aggressive wrangling; limited paid sick leave and a work culture of playing hurt; doctors who fail to communicate what it means, emotionally, to live with chronic illness. Her advice is empathetic but pragmatic, avoiding the existential quandaries that chronic illness presents.
A peppy but tempered optimism suffuses the book. Even as she asserts that chronic illness is always changing and never over—confronting, in theory, the sheer overwhelmingness of the fear, the grief, and the uncertainty—she insists on making it sound manageable, and she tends to resolve the harder, or existential, elements of chronic illness rather than confront them or simply let them stand. “Chronically ill people grieve two versions of ourselves: The people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined),” she writes. She introduces the idea of “ambiguous loss”: a type of grief that arises when there is no clear outcome. That ambiguity, Miller acknowledges, can prevent resolution. Indeed, although her illness is chronic and therefore inherently unresolvable, she allows herself the arc of resolution, as though she had been sick and now is cured. Perhaps that’s because, as Miller shares, she is currently in remission, thanks to finding a medication that resolves her symptoms for the time being. “Platitudes are annoying, but I’ve learned over the last decade that sometimes they’re true: There is light at the end of the tunnel, time does heal, and the sun will come out tomorrow—so long as you do the work,” she writes.
At one point, she brings up medical PTSD—a specific kind of post-traumatic stress that she argues, in loose hyperbole, is “criminally under-researched” and is common for those who have experienced a life-threatening medical event—but she prefers to focus on “post-traumatic growth,” defined by positive psychological change after an experience of adversity. While it’s a natural, and perhaps even constructive, habit to seek what’s positive in an ordeal, her attempts to be analytical, or to unearth something undiscussed or underappreciated about the experience of illness, is softened by the desire to find an upside. She confidently places herself and her book among those that assure readers that the suffering and loss of disease can be redeemed by spiritual or psychological gains. More than many contemporary memoirists, who are increasingly skeptical that meaning can be wrung from such painful experiences or that they follow any logic, she wants to transmit her hard-won lessons to her reader. Miller’s sunniness doesn’t admit the possibility that chronic illness can be shattering. Her title is not tongue-in-cheek: In her view, what doesn’t kill you really does make you stronger.
Reading the book, I was often reminded of Nancy Mairs. An essayist practiced at rhetorical argument, Mairs suffered from multiple sclerosis for much of her adult life; her late-middle-age essay collection about her progressive disability, Waist-High in the World: A Life Among the Nondisabled, guides us through episodes and scenes of her life that may, to an outsider, seem abject or pitiable but, in Mairs’s telling, are full of joie de vivre and lightness as well as determination and, yes, loss. She eschews direct advice to the reader, instead using her artfully rendered personal story, which includes meditations on what it has meant to find herself disabled, and what has really been taken away (not as much as you’d think), as an illustration. Her story isn’t one of triumph or restitution, but a glimpse into what her life is truly like. Miller, meanwhile, argues that illness allows the sick person to reevaluate what’s serving them and what isn’t. For her, illness grants perspective.
Reading Miller and Mairs side by side, I had the feeling that some of the difference in approach might be due to Miller’s age and life stage. As Hawkins, Conway, and others make clear, illness disrupts our peaceful assumption that life will steadily continue as it has until now. Illness is a place where a person comes up against the limits of their being—the physical limits of the living body, yes, but also mortality. Writing in her early thirties about the experience of her twenties, Miller recounts how, prior to getting sick, she saw the world as a series of accomplishments to achieve and challenges to conquer. Some of her growing awareness of what really matters (contentment and self-love rather than accolades) seems like the realization of a young woman who might have come to the same conclusions with time, illness or not. The invincibility of youth yields to the temperance and perspective of age. Mairs, for her part, shows none of that, perhaps because she had already had such realizations long ago.
In spite of a deluge of first-person accounts, we still have little cultural awareness of what it’s like to live a life defined by illness. Whether because there are so many different diseases and conditions without a unifying experience, or due to our inability to truly understand another body’s experience of pain, the fact that millions of people in the United States live with chronic illness, many of them invisible, remains opaque in our cultural imagination. Even our current public health crisis, which presents mortal danger to many, also has a chronic element: Covid-19 has created a generation of “long-haulers” who will have to manage chronic illness and who, public health officials say, have urgent, extensive needs. Dr. Anthony Fauci has speculated that many in this group will develop myalgic encephalomyelitis/chronic fatigue syndrome, one of the least understood or researched invisible chronic illnesses. As Dr. Anthony Komaroff wrote on the Harvard Health Blog, if just 5 percent of those who have had a Covid-19 infection develop chronic symptoms, and most of those have ME/CFS, that would double the known number of Americans suffering from the syndrome in the next two years.
Oddly, having spent 300 pages in Miller’s mind, I finished her book feeling as though I didn’t have a good sense of what her life, or rather her life with illness, is like now. Infusions every six weeks of an expensive biologic that keeps her system in check, yes, but what else? Does she still struggle with uncertainty, with her “ambiguous loss”? How does she envision her future—and how much does her illness play a role in that? It demonstrates the degree to which she ties everything up neatly—there are no loose ends, no lingering questions. Miller gives the impression of having found the wisdom to manage the loss of control and uncertainty of chronic illness.
Perhaps that’s what’s required in order to offer help to others, but it’s hard to trust her certainty. Even eight years after a diagnosis of chronic migraine, I still wonder if my symptoms, where a migraine is characterized more by crushing fatigue than throbbing pain in my head, wouldn’t be better explained by a diagnosis of some unexplored or as-yet undiscovered illness. I feel that an important part of myself, my reality, remains hidden from all but those who are closest to me. As I’m reminded day to day, week to week, chronic illness is forever, but it isn’t consistent. One of the most insidious parts of this, for me, has been that, on the days that are better, the physical relief cedes space to self-doubt. When my body and brain feel unencumbered, I begin to wonder if the other kinds of days exist, if the suffering is real—or if on those days I’m just lazy, depressed, and ineffectual. I wonder about the choices that I’ve made to accommodate my illness, and feel great shame about them. I can’t express how much suffering (and therapy) this magical thinking has cost me. That is time and effort I will never recoup. There is true, unambiguous loss.
When I discussed this book with my mother, who has suffered from a cluster of chronic illnesses for 40 years, the diagnoses for which are periodically revised, she agreed. “Illness is a thief,” she wrote to me in an email. “It takes a tremendous amount of work to seize back or transmute what is being stolen.” At their best, memoirs of illness offer examples of how that happens, or find words or moments that elucidate the feeling of disorientation, the immense effort of finding ways around obstacles. Often, they admit that one can’t seize back what is lost but only find ways around it, and that the process of finding meaningful ways to structure a life with illness is never done. As with any other life, it’s always a work in progress.