HHUM 222: Health, Illness, and Narrative

Sources and References

Primary textbook — Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (Picador). Supplementary texts — Rita Charon Narrative Medicine: Honoring the Stories of Illness; Audre Lorde The Cancer Journals; Anne Boyer The Undying; Arthur Frank The Wounded Storyteller; S. Lochlann Jain Malignant: How Cancer Becomes Us; Margaret Edson Wit; Ian Williams et al. The Graphic Medicine Manifesto; Arthur Kleinman The Illness Narratives. Online resources — Graphic Medicine open resource (graphicmedicine.org); Columbia University Narrative Medicine open materials.

1. Why Illness Needs Stories

Illness is not just a physical event. It is also a crisis of meaning. When a body begins to fail, the person inside that body suddenly needs to explain what is happening — to family, to doctors, to employers, and most importantly to themselves. Every culture has developed stories for doing this work: parables of sin and punishment, heroic recovery narratives, war metaphors, journeys to the underworld, tales of purification. None of these stories are strictly true, yet none of them are entirely false either. They are the scaffolds by which human beings turn raw biological catastrophe into something the mind can hold.

The field that this course belongs to — sometimes called medical humanities, sometimes narrative medicine, sometimes health humanities — proceeds from a simple but unsettling premise: the meaning of an illness is not fully contained in its pathology report. A tumour measured in centimetres, a white blood cell count, a staging grade — these are facts, but they do not tell a person what their illness is for, or who they will become while suffering it, or how their relationships will survive the treatment. Those questions belong to narrative, and narrative belongs to the humanities.

Arthur Kleinman, a psychiatrist and anthropologist whose 1988 book The Illness Narratives helped found the field, made a distinction that still organizes much of the scholarship. He separated disease (the clinician’s object — a lesion, a malfunction, a diagnosable entity) from illness (the patient’s lived experience — pain, fear, disruption, loss of identity) and from sickness (the social role the community assigns to the sufferer). A person can have a disease without feeling ill, can feel ill without detectable disease, and can be sick in the eyes of others no matter how they feel themselves. The gap between these three registers is exactly the space where narrative does its work.

This course focuses that broad field on a single cluster of illnesses: cancer, and particularly breast cancer. Cancer is uniquely suited to humanistic study. It produces a huge body of first-person writing, because its treatment course is long and its outcome uncertain — patients have time to write, and often have reason to. Its metaphors saturate public speech. Its politics are explicit: pink ribbons, awareness months, charity runs, survivor culture. And its treatments — surgery, radiation, chemotherapy — are themselves so violent that even successful care raises questions about what “successful” means. Cancer forces the narrative question into the open. It is the illness that most clearly shows how stories shape what it means to be sick.

We begin from a working definition. An illness narrative is any sustained act of telling — spoken, written, drawn, photographed, posted, performed — through which a person makes sense of a body in crisis. The narrative need not be autobiographical; fiction and drama can do the same work. It need not be coherent; fragments, lyric poems, and social-media posts also count. What matters is the intention to render bodily experience into shareable meaning. That rendering is what we will study.

2. Sontag’s Illness as Metaphor — Disease and Language

No single book shaped the modern critical study of illness more than Susan Sontag’s Illness as Metaphor, published in 1978 while Sontag herself was undergoing treatment for breast cancer. Its thesis is deliberately severe: metaphorical thinking about disease is not comforting but cruel. The figures of speech we attach to illnesses — calling cancer an “invasion,” a “battle,” a “consuming enemy” — do not merely describe. They prescribe. They tell patients how to feel, tell the public who to blame, and often shame the sick for the fact of their own sickness.

Sontag traces how tuberculosis, the signature illness of the nineteenth century, acquired an aura of spiritual refinement. The consumptive was romanticized as sensitive, artistic, erotically pale, too good for this world. Keats, Chopin, the heroines of opera — tuberculosis became the illness of genius, the sign of an inner flame burning the body from within. This romance was pure fantasy layered over a lethal infection that disproportionately killed the poor. But the fantasy made the disease meaningful, and that meaningfulness made it easier for culture to live with it.

Cancer, by contrast, has been given the opposite treatment. It has been coded as ugly, shameful, secretive, the punishment for repressed emotion or unexpressed anger or a cold personality. Sontag was particularly incensed by the pop-psychological claim, common in the 1970s, that cancer was the disease of people who could not cry, who held their feelings in, who somehow invited their tumours through their character. This is the metaphor as moral judgment: the patient becomes responsible for their own cells. Sontag calls this a kind of “punitive or sentimental fantasy,” and her goal in the book is to strip it away. Her famous programmatic sentence reads: the healthiest way of being ill is the one most purified of metaphorical thinking.

This is easier to declare than to achieve. Sontag herself acknowledged, in the 1989 sequel AIDS and Its Metaphors, that one cannot simply banish figurative language. Metaphor is how human minds handle the unknown. What one can do is stay alert to which metaphors are operating, which ones stigmatize, which ones absolve, which ones shift responsibility from the social to the individual or from the individual to the social. The critical task is not to achieve a metaphor-free description of illness — impossible — but to notice when a metaphor is being used to hurt.

The military metaphor deserves particular attention because it remains the dominant figure for cancer in 2020s English-language culture. Patients “fight” cancer, treatment is an “arsenal,” tumours are “invaders,” survivors are “warriors,” and those who die “lose the battle.” This language does real psychological work. It mobilizes courage; it offers a narrative of effort and reward; it lets friends and family feel they are cheering from the sidelines of a winnable contest. But it also has costs. If dying of cancer is losing a battle, then the dead are losers. Patients who want to stop aggressive treatment are accused of “giving up.” Patients whose tumours recur after years of remission are told they “did not fight hard enough.” The metaphor that motivates the fit and hopeful can silently condemn the exhausted and dying. Sontag’s point is not that such metaphors should be forbidden — they cannot be — but that we should know what they are doing.

A second Sontagian insight is that metaphors of disease travel outward, into politics. Tuberculosis lent the word “consumption” to economic life. Cancer lent its vocabulary to descriptions of social decay: a “cancerous” neighborhood, the “tumour” of corruption. AIDS in the 1980s was immediately drafted into nativist and homophobic rhetoric as a “plague” from “outside.” When an illness becomes a metaphor for society, the sick person becomes the society’s diagnosis. Sontag’s ethical demand is that we refuse this double move — that we let the sick simply be sick, not be required to represent something larger.

3. Embodiment and the Limits of Description

After Sontag, a second generation of scholars asked a harder question: even if we strip the metaphors away, can the body in pain be described at all? Elaine Scarry’s The Body in Pain (1985) argued famously that severe physical suffering is “world-destroying” — it unmakes language at the very moment one most needs language. The person in acute pain loses the vocabulary to describe what is happening; pain cannot be shared, only gestured at. This is why, when a patient reaches for words, they so often borrow the words of instruments of torture: “a knife,” “a vice,” “a hammer.” The body in pain has no vocabulary of its own and must borrow from the vocabulary of things that inflict pain.

Illness is not identical to pain, but many of the same problems apply. When a woman feels a lump, when a patient notices an unfamiliar fatigue, when a scan returns a shadow, the experience being reported is often preverbal. Sensation precedes the words for it. The patient must build the description as she speaks, using the only words she has, which are usually wrong. Clinicians, trained to translate complaints into diagnostic categories, often accept a simplified version and move on. The richness of the experience gets collapsed into checkbox symptoms. This loss — what phenomenologist Havi Carel calls the gap between “the third-person body” of medicine and “the first-person body” of the patient — is not a failure of politeness. It is structural. It comes from the fact that medicine must translate, and translation always drops something.

Tom Couser, in Recovering Bodies: Illness, Disability, and Life Writing, adds a further complication. Writing about one’s own body is not a neutral act of description; it is an act of self-construction. When a person writes “I have cancer,” they are simultaneously announcing a fact and taking up a position in a pre-existing set of cultural roles — the stoic patient, the fighter, the victim, the sage. Life writing about illness always has to negotiate with these ready-made scripts. Either you inhabit one of them and lose some of your individual experience, or you refuse them and must invent your own language, which risks being illegible to readers.

Couser’s book also raises an ethical question that will matter throughout the course: the question of who has the right to tell whose illness story. A mother can write a memoir about her dying child; is she telling her own story or the child’s? A caregiver can write about a spouse’s dementia; is the spouse still a person whose privacy must be protected? A journalist can profile a cancer patient; whose voice rules the page? Couser argues that life writing about illness inherently touches on somebody else’s vulnerability, because illness rarely happens to one person in isolation. The writer incurs obligations.

A third strand comes from disability studies, which has sometimes criticized illness narratives for implying that sick bodies are only meaningful when they can be recovered and told about. Disability scholars point out that many bodies cannot be “recovered” in the sense that memoir demands — chronic conditions do not have the neat narrative arcs that publishers like. Against the recovery memoir’s rhythm of crisis → treatment → healing → lesson learned, disability writing often demands a flatter, less redemptive form: a chronic poetics, in which the body is not a problem to be solved but a condition to be inhabited. We will return to this in the chapter on poetry.

4. The Pathography Tradition — Audre Lorde and the Cancer Memoir

Book-length first-person accounts of illness have a long history — Cotton Mather, John Donne, Alice James all wrote them — but the modern cancer memoir is essentially a creation of the late twentieth century. Its founding text is Audre Lorde’s The Cancer Journals, published in 1980. Lorde, a Black lesbian feminist poet, had undergone a mastectomy for breast cancer in 1978. The Cancer Journals is a compressed, furious, grief-struck, and analytically sharp book — part diary, part essay, part manifesto. It refuses almost every convention of the recovery memoir before those conventions had even fully hardened.

Lorde’s central refusal is the silicone prosthesis. After her mastectomy, she was told by hospital staff and by other women that she should wear a prosthetic breast, not because it had any medical purpose but because it would preserve the appearance of a two-breasted body and make other people more comfortable. Lorde said no. She wrote that the demand for prosthesis was a demand that she conceal her cancer, conceal her scar, conceal the fact of her survival and her vulnerability, in order to keep the cultural image of the “healthy woman” intact. To wear the prosthesis would have been to participate in a silence that, she argued, was killing women — a silence that prevented Black women, poor women, and queer women from even learning that their breast pain deserved investigation. Visibility was safety.

This argument connects Lorde’s book to her broader political essays, particularly “The Transformation of Silence into Language and Action.” Lorde had come to believe that silences are never neutral — they are enforced, they are chosen under pressure, they are survival strategies that gradually become suffocations. Her cancer diagnosis clarified her conviction that speech, even speech that embarrasses or frightens, is a political duty. The Cancer Journals refuses what she called the “travesty of prosthesis” precisely because prosthesis is a form of forced silence written on the body itself.

The book is also one of the first to insist that cancer is not only an individual misfortune but an environmental and political fact. Lorde asks whether the rising cancer rates of the twentieth century might be connected to pesticides, industrial solvents, pharmaceuticals, nuclear testing — a question that scientific mainstream in 1980 was still reluctant to take seriously. She links breast cancer to the suppression of women’s health knowledge, to racialized healthcare disparities, and to the profit structure of the treatment industry. Decades before the term “pinkwashing” existed, Lorde had already named the problem: the fashionable concern for breast cancer coexisted with, and even concealed, the economic and industrial processes that helped produce it.

Arthur Frank, writing a decade later in The Wounded Storyteller (1995), offered a useful typology that helps us locate Lorde. Frank distinguishes three kinds of illness story. The restitution narrative says “I was healthy, I got sick, and with medicine’s help I will be healthy again”; it is the story modern medicine most wants patients to tell, because it makes medicine the hero. The chaos narrative refuses any narrative arc at all — it is the story of an illness that cannot be shaped, a descent that offers no lessons. Chaos narratives are the hardest to read because they confront us with meaninglessness, and Frank argues that they deserve respect rather than premature fixing. The quest narrative treats illness as a journey that delivers a form of insight or transformation — the sick person does not return to their old life but finds a new one. Frank is careful to note that none of these forms is more “true” than the others; they are available postures, each of which captures something real.

Lorde’s Cancer Journals is a quest narrative, but a militant one — the quest is not for personal healing but for political voice. Frank’s typology also lets us see why the restitution narrative has become the default. It is easier to market, easier to televise, easier to turn into a charity campaign. Chaos and quest narratives are less manageable, which is exactly why they are often the most ethically valuable: they let the sick person speak when restitution is impossible.

5. Chronic Poetics — Poetry of Illness

If memoir insists on telling, poetry is often the form that admits what memoir cannot quite say. A lyric poem can hold a moment of pain, or fear, or tenderness, without resolving it into a story. This makes poetry especially hospitable to chronic illness — conditions that never climax, never end, never deliver the redemptive lesson that prose expects.

Emilia Nielsen, in her scholarship on breast cancer poetry, has used the phrase chronic poetics to describe a mode of writing that refuses the tidy arc of the recovery memoir. Chronic poetics takes seriously that many cancer patients are never “cured” — they live in surveillance, in medication regimens, in recurrent fear, in side effects that never quite lift. A poetry adequate to this experience cannot be about overcoming. It has to be about inhabiting. Its rhythm is cyclical rather than linear; its tense is continuous; its reader is invited to dwell rather than to journey.

One can point to a small canon of English-language poetry that does this work. Lucille Clifton’s poems on her own breast cancer, written over years, treat the body as a site of continued negotiation — sometimes tender, sometimes enraged, never “over.” Anne Sexton, Jane Kenyon, and Adrienne Rich each wrote illness poems that refuse resolution. More recently, poets like Kate Hargreaves and Sara Machnik have extended the tradition into experimental and fragmentary forms, using white space and typographic disruption to register what cannot be stated in continuous prose.

Poetry is also uniquely able to hold the body’s weird sensory inventories — the taste of chemotherapy, the coldness of the scanner, the specific itch of a surgical scar, the surreal conversations in a hospital room. These details resist paraphrase; they are particular, private, almost too small to matter. Prose memoirs often edit them out in favour of larger emotional beats. Poems can preserve them. In doing so they restore a kind of dignity: the sick person, even when most reduced, is still someone for whom the specific feel of a Tuesday afternoon matters.

For the literary critic, chronic poetics raises a theoretical question: what does it mean to write in a form that refuses catharsis? Aristotelian poetics treats narrative closure as the whole point of art — the tragedy purges, the comedy restores order. Chronic illness poetry denies this closure on purpose, because closure would be a lie about the condition. This is a modest but real challenge to Western literary theory. It suggests that some of the deepest work art can do is the refusal to resolve.

6. Narrative Medicine — Rita Charon’s Method

So far we have mostly looked at patients writing. The second great stream of the field considers what happens when doctors read. In 2001 the physician and literary scholar Rita Charon published an essay in JAMA called “Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust.” It proposed a training program for physicians that would do for narrative what medical school already did for biochemistry. In her 2006 book Narrative Medicine: Honoring the Stories of Illness, Charon worked out the program in detail, and it has since become the basis for graduate programs, clinical workshops, and medical school curricula around the world.

Charon’s starting observation is deceptively modest: clinical encounters are, among other things, acts of storytelling. The patient arrives and begins to tell — here is what happened, here is how long it has been going on, here is what I think it means. The physician listens, interprets, and responds, partly with questions, partly by retelling the patient’s story back to them in a professional vocabulary (“it sounds like”), partly by fitting the story into an institutional form (a chart note, a differential, a diagnosis). If the doctor is inattentive to story — to its sequence, its omissions, its emotional weighting, its characters, its implied audience — then the clinical encounter fails at the level of meaning even if the biological facts are captured.

Charon argued that medical training had largely neglected this narrative competence. Students learned to extract data but not to interpret. They learned to recognize symptoms but not to hear silences. They learned to give information but not to tolerate the patient’s slower, halting attempt to describe an uncertain sensation. Narrative medicine proposes specific practices for repairing this deficit. The most famous is parallel charting: alongside the official clinical note, the trainee writes a second, private note about the patient — not the disease, but the person, the encounter, the trainee’s own reactions. The parallel chart trains the mind to notice what the official chart has no column for.

A second practice is close reading. Narrative medicine workshops assign fiction and poetry to medical trainees and ask them to read slowly, attend to form, and then talk and write about what they noticed. The hypothesis is that a physician who can follow the emotional grammar of a Chekhov story is more likely to follow the emotional grammar of a real patient. This is not a vague humanism. Charon is making an empirical claim: narrative competence is a trainable skill whose presence can be observed in clinical practice.

A third practice is reflective writing in response to difficult encounters. Trainees write short pieces about cases that unsettled them — a death, a disclosure, a family argument, a moment of their own fear. Sharing these pieces in structured groups produces, Charon reports, both individual reflection and institutional change. Physicians begin to recognize each other’s emotional labour, which medical culture had treated as unprofessional to mention.

Narrative medicine is not without critics. Some scholars worry that it risks turning empathy into a performance — a technique the physician executes to achieve rapport, rather than a real ethical relation. Others note that reading literature does not guarantee moral behaviour; history has had plenty of cultured villains. Still others, from disability studies, warn that the narrative model may privilege patients who can produce well-formed stories and overlook those whose suffering is chaotic, inarticulate, or expressed in ways that do not match literary conventions. These criticisms are important, and Charon herself has engaged with them in later writing. But the core idea — that medicine without narrative attention is medicine at half capacity — has become widely accepted.

For our course, the significance of narrative medicine is double. It tells us why illness stories matter for the doctors who will read them, and it gives us a vocabulary — close reading, parallel charting, reflective response — that we can apply to the texts we study. When we analyze Audre Lorde or Anne Boyer, we are doing the same kind of work narrative medicine asks of physicians: we are paying attention to form, to voice, to omission, to the ethical claims a sick person makes on us through language.

7. Wit — Drama, Death, and Detached Concern

Margaret Edson’s one-act play Wit — written in 1991, premiered 1995, Pulitzer Prize 1999, filmed by Mike Nichols with Emma Thompson in 2001 — is the most widely taught single work in narrative medicine. It is assigned to medical students as routinely as Hamlet is assigned to English majors. The play stages, in ninety minutes, almost every critical question the course has raised.

Vivian Bearing is a fifty-year-old professor of seventeenth-century English poetry, a specialist in John Donne’s Holy Sonnets. She is celebrated in her field for rigorous close reading and for an unsentimental, demanding, almost aggressive style of teaching. At the start of the play she is diagnosed with stage IV metastatic ovarian cancer. Her oncologist offers her an experimental eight-cycle regimen of “full-dose” chemotherapy — not necessarily because it will cure her, but because the research team will learn from the data. Vivian, who has spent her life admiring intellectual toughness, agrees: she wants to be exceptional, and she wants to be useful. The rest of the play charts her body’s collapse and her gradual realization that the world she constructed — a world organized around verbal mastery, wit, and argumentative sharpness — cannot protect her from what is happening.

Edson’s dramatic strategy is to put academic close reading and medical close reading in the same room and let the audience see that they are doing the same thing to a body. The oncologists round on Vivian the way she once lectured on Donne — brilliant, impersonal, uninterested in her interior life, hungry for the next analytic move. Her former student, now a medical fellow, greets her “I did my paper on your Holy Sonnets” while treating her as a case. The brutal irony is that Vivian, who spent her career demanding interpretive toughness from students, has become the object of exactly that toughness from her doctors, and it turns out to be unbearable.

The play’s ethical centre is not Vivian’s humiliation but her encounter with Susie, a nurse. Susie does not know John Donne. She mispronounces “soporific.” She brings a popsicle and splits it in half so that she and Vivian can share it in the middle of the night. She sits on the bed. She uses Vivian’s first name. She explains the difference between a “full code” and a “do not resuscitate” order in plain language, without the performance of wit. Edson’s point is not that Susie is morally superior to the oncologists — Susie cannot do what they do — but that Vivian needed both, and her doctors, because of the culture they were trained into, could not give her the second half.

Vivian’s central poem in the play is Donne’s “Death Be Not Proud,” and the play’s most famous moment is a flashback to a graduate seminar where her own mentor, the formidable E. M. Ashford, scolds her for using an edition of Donne with “off-kilter” punctuation. In the sonnet’s final line — “And death shall be no more, Death, thou shalt die” — the edition Vivian used printed a semicolon and an exclamation point. The correct text, Ashford insists, has only a single comma before “Death” and a period at the end. Nothing stands between life and life eternal but a comma. No melodrama. No shouted triumph. Just a breath. Edson is making a theological and formal point at once: the question of whether death has a meaning is not settled by dramatic punctuation, it is settled by the smallest marks on the page. At the end of the play, as Vivian dies, she reaches toward a light and the stage directions call for her to step out of her hospital gown — which is, on stage, a naked moment. The comma has been crossed.

Wit is so effective as a teaching text because it refuses to let either side win. Medicine is not villainized — the doctors are competent, mostly kind, doing real science. Poetry is not sanctified — Vivian’s cruelty as a teacher is shown honestly, and her love for Donne does not, in itself, save her. What the play insists on is that the two forms of knowledge need each other. A physician trained only in pathology will miss what is happening to a patient. A scholar trained only in texts will be unprepared for her own dying. The point is not that humanists are better than doctors. The point is that both are incomplete.

The play also dramatizes what medical ethics calls detached concern — the professional posture physicians are trained into, in which they remain warm enough to be kind but cool enough to operate. Wit shows detached concern from the patient’s side of the bed, and shows that from that side, “detached” comes through much more strongly than “concern.” For medical educators this is the lesson that the play drives home: the posture that feels balanced to the doctor feels abandoning to the patient.

8. Counterstories Against “Pink Ribbon Culture”

By the 1990s, breast cancer in North America had become the most visible, best-funded, most culturally saturated illness in the history of medicine. The pink ribbon — adapted in 1991 from the red AIDS ribbon — became the uniform of a vast movement. Charity runs, awareness months, merchandising campaigns, corporate sponsorships, and survivor parades built a public face of breast cancer that was cheerful, feminine, communal, unified, and optimistic. This phenomenon has come to be called pink ribbon culture, and a significant strand of scholarly and literary work, including Emilia Nielsen’s essays and Anne Boyer’s The Undying, is devoted to describing what pink ribbon culture gets wrong.

The core critique is structural rather than personal. Nobody doubts that many participants in pink ribbon culture mean well. The problem is what the movement does as a system. First, it centers a particular kind of patient: the white, middle-class, married, suburban, heterosexual woman whose cancer responds to treatment and who can re-enter a normal life as a “survivor.” Women who die, women who live in chronic metastatic disease, women whose cancer is linked to racialized environmental exposure, women whose treatment destroys their sexuality or fertility or economic independence — these stories do not fit the tone. They are edited out, or relegated to the margins as sad exceptions. Barbara Ehrenreich, in her 2001 Harper’s essay “Welcome to Cancerland,” noted with some rage that the official voice of breast cancer advocacy had become relentlessly upbeat — teddy bears, inspirational greeting cards, pink stationery — and that this upbeatness was a form of silence about the women it failed to describe.

Second, pink ribbon culture is financially entangled with the same industries that may contribute to cancer incidence in the first place. Corporations that manufacture cosmetics containing endocrine disruptors, food products linked to obesity-related cancer, or consumer goods made with carcinogenic solvents routinely sponsor breast cancer awareness campaigns. “Pinkwashing” — the term was popularized in the 2010s — names the strategy by which a company buys moral cover for its practices by attaching a pink ribbon to its product. A charitable donation of a few cents per purchase lets a brand be seen as a breast cancer ally while its underlying supply chain continues unchanged. Audre Lorde had raised this issue in 1980, and Anne Boyer would raise it again forty years later with even more precision. The critique has not yet succeeded in dismantling the practice.

Third, pink ribbon culture tells a particular kind of story about the sick person — the survivor story. A survivor is someone who had cancer, fought it, overcame it, and now runs 5K races in a pink shirt. The survivor is admirable, photogenic, and inspiring. But the survivor story is an implicit insult to the dying. If survival is a virtue, then death from cancer is a failure of virtue. If pink ribbon culture venerates only those who came out the other side, then patients who will not come out the other side are exiled from the movement that claims to speak for them. The counterstory writers — Lorde, Boyer, Nielsen, Lochlann Jain — insist that an honest politics of breast cancer has to include the dead, the dying, and the permanently ill.

The term counterstory is drawn from ethicist Hilde Lindemann Nelson’s book Damaged Identities, Narrative Repair (2001). A counterstory is not merely a complaint about a dominant story; it is a deliberate literary project to replace one narrative of an identity with another. Nelson’s insight is that identities are maintained through circulating stories — “women are naturally nurturing,” “immigrants strain the system,” “survivors are brave” — and that these stories can be dislodged only by other stories, not by abstract arguments. Counterstory is therefore a political tool of narrative repair. It is the technique that The Cancer Journals, The Undying, Malignant, and much of contemporary breast cancer poetry share: they are all attempts to replace the public story of breast cancer with a more honest one.

9. Anne Boyer and the Anti-Memoir

Anne Boyer’s The Undying, published in 2019, won the Pulitzer Prize for non-fiction and is currently the most ambitious recent addition to the cancer counterstory tradition. Boyer was a poet and single mother teaching at a Midwestern art school when she was diagnosed, at forty-one, with a particularly aggressive triple-negative breast cancer. The Undying is her account of treatment, but it is deliberately and polemically not a memoir in the conventional sense. Its subtitle lists its real subjects: “pain, vulnerability, mortality, medicine, art, time, dreams, data, exhaustion, cancer, and care.” The book is an essay, a history, a critique, a prose poem, a lament, and a manifesto. It resists almost every formal expectation a reader might bring to a cancer memoir.

Boyer’s central refusal is the refusal to tell a redemptive story. The book acknowledges survival as a fact but refuses to treat it as a victory. It spends long passages on the indignities of chemotherapy, on the sleep-destroying anxieties of childcare during treatment, on the humiliation of medical billing, on the specific ache of a body stripped of its hair and its immune system and its capacity to work. It does not offer the reader the comfort of learning that suffering was, in the end, worth something. Boyer quotes Audre Lorde often, and like Lorde she insists that the truth about breast cancer in the current economic order is that it is a disease of disposable bodies, and no amount of personal insight turns it into anything else.

A striking feature of the book is its anger at the literature that cancer has produced. Boyer reads many breast cancer memoirs in order to describe what bothers her about them. She identifies a style of inspirational writing in which cancer becomes an opportunity for self-improvement, a chance to “learn what really matters,” a pretext for gratitude journals and lifestyle pivots. Boyer argues that this style is structurally tied to a consumer economy that requires every misfortune to be repurposed as growth. It is not just bad literature; it is an ideological product. Her answer is to write a book that tells readers, with considerable force, that breast cancer did not teach her anything inspirational and that the demand for inspirational lessons is itself a symptom of the sickness of the culture that produced the disease.

Boyer is also historical. The Undying includes extended reflections on ancient writers — Aelius Aristides, a hypochondriac of the second century whose Sacred Tales documented every humiliation of Roman-era medicine; John Donne’s Devotions upon Emergent Occasions, written during his own grave illness; Alice James, the diarist who recorded her own breast cancer in the 1890s. Boyer uses this long tradition to argue that the female cancer writer is always writing against a medical apparatus that does not quite believe her, within an economic order that cannot spare her, and through a literary culture that prefers her to be brave. The genealogy is part of the counterstory: she is not a lone complainer; she belongs to a long line of women whom medicine has failed to hear.

The book’s formal refusal matters. A conventional memoir would be chronological, would foreground the narrator’s personality, would build toward an emotional climax, would reward readers with a resolution. Boyer’s book is associative, fragmentary, reluctant to center its own “I,” and ends without anything like closure. This refusal is not a failure of craft; it is a thesis. Boyer believes that the conventional form of the cancer memoir does ideological damage by teaching readers that such experiences can be satisfyingly narrated. An honest book, in her view, has to preserve some of the experience’s refusal of narrative.

Read alongside Frank’s typology, The Undying is a hybrid: a quest narrative in its ambition, a chaos narrative in its rejection of arc, and in places a straightforward analytic essay. Read alongside Sontag, it is a book that takes Sontag’s injunction seriously — it attacks the metaphors by which breast cancer is publicly managed — while also recognizing that Sontag’s own austerity cannot hold for an experience as embodied, rageful, and specific as Boyer’s. It is, in other words, the current leading example of what a literate, politically conscious, formally adventurous cancer counterstory looks like.

10. Cancer, Gender, and the Body Politic

The scholarship has also asked how gender shapes illness narrative, and cancer — especially breast cancer — is where the question gets sharpest. Breast cancer is not only a disease that disproportionately affects women; it is a disease that culturally happens to a body part saturated with meanings about femininity, motherhood, sexuality, and aesthetic worth. The experience of breast cancer is therefore always also an experience of being looked at, judged, and repositioned in the economy of gendered visibility.

S. Lochlann Jain’s Malignant: How Cancer Becomes Us (2013), winner of several awards, is a dense anthropological and legal study of how cancer is manufactured as a cultural object in the United States. Jain analyzes everything from the history of the mammogram to the legal status of carcinogens to the marketing of “awareness.” Across the book runs the concept of “prognosis time”: the strange temporality of a diagnosis, in which the patient is asked to plan for a future that is now statistical, to grieve in advance for a self that may or may not die, and to continue working and parenting and paying bills inside this probabilistic fog. Jain’s insight is that cancer is not just an illness but a particular kind of time that has been invented by the intersection of epidemiology, insurance, and oncology. Living with cancer means living inside that invented time, and the stories patients tell are, among other things, attempts to describe what it is like to inhabit a probabilistic future.

Jain’s essay “Cancer Butch” is a particularly rich contribution. A masculine-presenting lesbian who underwent breast cancer treatment, Jain found that nearly every element of the clinical environment was scripted for a particular kind of feminine patient — the pink gowns, the offers of wigs, the casual assumptions about husbands, the aesthetic of “surviving as still pretty.” Jain had to navigate a medical culture that could not see a person like them, and the essay turns that experience into a theoretical claim: breast cancer medicine enforces a gender norm and penalizes deviation from it. For butch, trans, and nonbinary patients, every clinical encounter includes a small performance of femininity demanded by the room. The performance is exhausting, and in some cases it drives patients away from care.

Yolinliztli Pérez-Hernández’s autoethnographic work and Lana Lin’s writing on queer survival extend this argument. They ask what it means to survive cancer if the survival is measured by one’s ability to return to a feminine appearance that one never wanted in the first place. The conventional survivor narrative — the woman who receives a new haircut, a flattering wig, a prosthesis, a reconstructed breast, and returns to her old life — depends on a body that conforms to an unexamined norm. A queer counterstory insists that survival can mean something else: continuing to live, on one’s own terms, in the body one actually has.

Hilary Mantel’s memoir Giving Up the Ghost (2003) offers yet another angle. Mantel was not diagnosed with cancer but with severe endometriosis, a condition that was repeatedly misdiagnosed by doctors who preferred to treat her as mentally ill. Her ovaries and uterus were eventually removed; the hormonal consequences reshaped her body for the rest of her life. Mantel’s memoir is therefore not technically a cancer book, but it belongs in this conversation because it documents how medicine’s gendered assumptions — that women’s pain is exaggerated, that female reproductive organs are not worth saving, that a woman’s distress is probably psychiatric — can damage a body more severely than the underlying disease would have. Mantel’s case is extreme, but the pattern she describes is common. Women’s illness narratives repeatedly have to do the extra work of establishing credibility before they can do the work of describing experience.

Jo Spence, the British photographer and writer whose work is collected in Cultural Sniping and elsewhere, addressed all of this directly with her camera. After her breast cancer diagnosis in 1982, Spence turned her own body into an art project. She photographed her scars. She photographed her hospital encounters. She photographed herself in costumes that deliberately exaggerated the hospital gown, the surgical marker, the institutional light. Her work — “phototherapy,” she called it — was simultaneously documentary, theatrical, and polemical. She wanted to show that the female cancer patient is always already being looked at — by clinicians, by family, by strangers — and that the only way to reclaim the gaze was to turn the camera back and take the picture yourself. Spence’s self-portraits anticipate, by decades, the concerns of online autopathography that we will consider in Chapter 12.

11. Graphic Medicine — Comics as Care

One of the most important recent developments in health humanities is the emergence of graphic medicine — the deliberate use of comics to tell, analyze, and teach about illness. The term was coined in 2007 by Ian Williams, a physician and cartoonist, and the 2015 Graphic Medicine Manifesto (Williams, MK Czerwiec, Susan Merrill Squier, Michael Green, Kimberly Myers, Scott Smith) established the field’s vocabulary and ambitions. The open resource graphicmedicine.org collects hundreds of titles and essays.

The simplest case for graphic medicine is that comics are unusually good at a few things that matter for illness. They can show the body — a gown, a needle, a scar, a waiting room — without the mediation of description. They can represent time non-linearly, placing memories and futures alongside the present in a single page layout. They can accommodate silence by simply not writing words, letting images carry meaning. And they can hold contradiction on the same page: a smiling face and a terrified interior monologue in the same panel. These formal affordances make comics hospitable to experiences that prose has trouble capturing.

The canonical example is David B.’s Epileptic, the French cartoonist Pierre-François Beauchard’s long comic about his brother’s severe epilepsy. Other foundational works include Brian Fies’s Mom’s Cancer (2006), in which Fies documents his mother’s metastatic lung cancer with unusual frankness; David Small’s Stitches, about childhood cancer and medical trauma; Marisa Acocella Marchetto’s Cancer Vixen, a stylistically irreverent memoir of breast cancer treatment in New York City; and MK Czerwiec’s Taking Turns, about the author’s years as a nurse on an AIDS ward in the 1990s. Czerwiec, who goes by the pen name “Comic Nurse” and co-authored the Manifesto, is also an example of what the field calls a clinician-cartoonist — a medical professional who uses comics both to process her own experience and to teach.

The Manifesto makes several claims worth unpacking. First, it argues that comics democratize the production of illness narrative. A comic can be made by one person with paper and a pen; it does not require the institutional machinery of a trade publisher or an academic press. This matters because the people most affected by illness are often also the most disadvantaged by the gatekeeping of traditional publishing. Second, the Manifesto argues that comics have a pedagogical power in clinical training that prose does not, because they force the reader to slow down and see the body. When a medical student reads a comic panel showing a patient receiving a diagnosis, they are made to look at the patient’s face, at the hand on the edge of the desk, at the window — details that a clinical note would never include. Third, the Manifesto argues that comics can be used by patients themselves as a form of narrative repair: drawing one’s own treatment can allow a patient to assert agency over an experience in which they were otherwise passive.

The field has also produced a scholarly literature on how images do ethical work. Tom Couser’s concept of narrative obligations applies to comics as well — perhaps more sharply, because drawing a person implicates the artist in their appearance. A cartoonist who depicts her dying mother is choosing a face, a posture, a moment. The choice is intimate and unavoidable. Graphic medicine scholarship has begun to ask how artists navigate these choices — how, for example, Brian Fies drew his mother’s illness without turning her into a symbol, or how Emilia Nielsen’s discussions of “narrative repair” apply to the visual as well as the verbal field.

For the student of illness narrative, graphic medicine also recalibrates what counts as literary. It insists that a page of carefully composed panels is as serious an object of study as a page of prose, and that the techniques for reading it — attention to panel size, gutter, colour, character design, pacing — are continuous with the techniques of close reading taught in literature classes. The point is not that comics are a sub-literature to be defended but that the boundary between “proper” literary form and the graphic memoir was always arbitrary.

Small-press and independent work is particularly important here. Roman Ruddick’s Now What? is a zine-format illness narrative made outside of traditional publishing; Lynch and Richards’s Exploding into Life is a photographic and prose collaboration about dying of cancer that also does not fit a trade-book mold. These works suggest that the future of illness narrative may lie partly in forms that are deliberately un-commodifiable — too personal, too small, too experimental to be pinkwashed.

12. Online Autopathography — Selfies, Blogs, and Social Media

The most recent chapter in the history of illness narrative is being written on the internet. Patients post on Instagram, TikTok, Substack, Reddit, CaringBridge, and Twitter/X. They upload chemo-day selfies, surgery updates, pathology-report screenshots, GoFundMe appeals, livestreamed deaths. The academic term of art for this body of work is online autopathography — a coinage that extends Anne Hunsaker Hawkins’s 1993 word “autopathography” (self-written illness stories) into the digital era.

Tamar Tembeck’s work on “selfies of ill health,” published in Critical Studies in Media Communication, is the most cited analysis of the phenomenon. Tembeck argues that the ill selfie is not a new form so much as the logical extension of Jo Spence’s phototherapy into an age of universal cameras. When a patient takes a picture of herself in a hospital bed and posts it to Instagram, she is doing several things at once. She is asserting her own authorship of her image against the clinical gaze that has been examining her. She is creating a record of a day that might otherwise be lost inside institutional time. She is communicating to a network of loved ones and strangers, which reduces the loneliness of the hospital. And she is entering, whether or not she realizes it, a public archive that future cultural historians will read the way we now read Victorian diaries.

The ill selfie is also controversial. Some critics argue that it trivializes illness by fitting it into the ordinary aesthetic of Instagram — a hospital bed becomes just another vaguely interesting background. Others argue that it commercializes illness by drawing patients into the same economies of attention, brand partnership, and performance that govern the rest of social media. Nina Riggs’s blog Suspicious Country, kept during her treatment for metastatic breast cancer before her death in 2017, is an example that pushes against such dismissals: Riggs used her blog (and later her memoir The Bright Hour) to produce writing of genuine literary seriousness inside the platform’s casual format. The platform did not trivialize her work; she held her voice inside it.

Anne Boyer, similarly, used Tumblr and later Substack to post fragments during and after her treatment, and some of those fragments became parts of The Undying. The online platform was not merely a draft stage; it was a site where the writing was responsive to readers in real time, where friends and strangers commented, where the boundary between the book being written and the illness being lived was deliberately thin. This is a mode of composition that older publishing forms cannot accommodate, and it has produced work that could not have existed in any earlier era.

Scholarly attention to online autopathography raises some of the same questions that applied to earlier forms, translated into a new idiom. Who has the right to tell whose story when the story is being told to thousands of strangers? What are the ethical obligations of the patient-author to other patients who might read and recognize themselves? What happens to patient privacy when a medical system’s failures are described in a public post — is the physician named, defended, silenced? What happens when a patient dies and their social media presence continues to be curated by family, friends, or an estate? These are live ethical questions that the field is still working out.

It is worth noting what online autopathography has already accomplished, politically. The #MeToo movement for medical misogyny — the online sharing of stories about doctors who dismissed women’s pain, misdiagnosed endometriosis or heart attacks, or refused to take Black women’s obstetric complaints seriously — has produced real regulatory and cultural change, and it could not have happened without the platforms. Disability activists have similarly used social media to produce counterstories that older publishing could not reach, particularly around chronic illness, long COVID, and conditions that medical orthodoxy had dismissed. Online autopathography is not just memoir; it is political organization by narrative.

13. From Reading to Writing — Narrative as Reparative Practice

We return to the question we began with: what are illness stories for? The course’s answer, by the end, has several layers, and it is worth articulating each.

At the most personal level, stories help the sick person survive. Arthur Frank, whose own cancer experience informed The Wounded Storyteller, argues that telling a story about one’s illness is not a literary indulgence but a form of care for the self. The act of narration lets the patient reclaim a self that medicine has partly absorbed into a case. This does not mean that narration cures anything. It means that narration keeps the patient’s personhood legible — to others, and crucially to the patient themselves — during an experience that tries to erase it. Frank calls this the obligation of the “wounded storyteller” to speak: those who have suffered and can still talk owe something to those who are suffering and cannot.

At the relational level, stories help the sick person be cared for. A caregiver who reads Wit or The Cancer Journals or The Undying has been given a kind of training in what illness is actually like from inside. The training does not replace direct attention to the real patient in the room, but it enlarges the caregiver’s capacity to recognize what they are seeing. This is the Charon argument translated from medical school to ordinary life: narrative competence is not only for professionals, and not only for patients, but for everyone who will at some point need to care for a body in crisis — which is to say, for everyone.

At the clinical level, stories help the medical system do less harm. If physicians are trained in narrative attention, they will interrupt less, collect richer histories, make fewer errors of assumption, and leave their patients feeling less abandoned. The evidence for this — admittedly still partial — is accumulating in the narrative medicine literature, and the intuition behind it is consistent with everything we know about how trust and communication affect clinical outcomes. A doctor who can listen is a doctor whose patients can be honest, and a doctor whose patients can be honest is a better diagnostician and a better healer.

At the political level, stories are instruments for changing the structures that produce illness and determine who survives it. Audre Lorde insisted on this from the start: breaking the silence about breast cancer was not only personally liberating but structurally necessary, because silence was what allowed the profit-making machinery of the medical-industrial complex to continue without accountability. Anne Boyer extends the same argument. S. Lochlann Jain extends it further. The counterstory is not only an aesthetic achievement. It is a tool of institutional change, and the institutions it targets — insurance, pharmaceutical pricing, environmental regulation, gendered diagnosis — respond more readily to narrative than to statistics, because the people who run them are also human beings who think in stories.

At the broadest level, stories about illness are stories about being human at all. Every person, without exception, will be sick, and will die, and will care for someone who is dying. The literature of illness is therefore not a specialist subgenre; it is a central strand of the literature of being a person. To read Sontag, Lorde, Boyer, Edson, Charon, Frank, Jain, Kleinman, Couser, the Graphic Medicine Manifesto, and the rest of the texts this course engages with is to prepare — at an intellectual and emotional level that no medical textbook can prepare you for — for the condition of embodiment itself.

A useful closing distinction comes from queer theorist Eve Kosofsky Sedgwick, who in her late essay “Paranoid Reading and Reparative Reading” contrasted two postures a reader can take toward difficult texts. The paranoid reader assumes the worst about a text and reads defensively, trying to expose its ideology before it can do damage. The reparative reader reads in the hope of finding something useful — a fragment, a gesture, a sentence — that can be taken away and lived with. Both postures have their moments. Sontag is often a paranoid reader of cancer metaphors; Charon is often a reparative reader of patients’ stories. In this course we have used both postures. We have been paranoid about pink ribbons and detached concern and medical silence. We have been reparative about Donne’s comma, Susie’s popsicle, Lorde’s refusal, Boyer’s anger, Jain’s time, Czerwiec’s panels, Nina Riggs’s blog posts.

The final assignment of the field — and, in a sense, of this course — is not to choose between these postures but to practice them both with sufficient skill that we can bring each to the moment that needs it. When the system is hurting the sick, paranoid reading will protect them. When the sick person is trying to survive the day, reparative reading will keep them company. What illness narrative teaches, across all the genres we have studied, is that both of these tasks are within reach of ordinary readers — and that doing them, in whatever small way any of us can, is part of what it means to care.

The body is going to fail. All of them, eventually. The question has never been whether to tell stories about that fact — humans cannot help telling them — but which stories, told by whom, with what obligations, to what ends. The work of this course has been to make that question conscious, so that when the time comes, as it always does, you will be able to recognize the story you are inside, and choose what to say next.