Healing Stories: Wellness and Narrative Medicine
This piece is part of a series that responds to the theme of the 2023 Cleveland Humanities Festival: “Wellness.”
“Whether ill people want to tell stories or not, illness calls for stories.”
—Arthur Frank
At seven months old, my daughter developed a tic—a seemingly involuntary tilt of her head toward her left shoulder. This isolated plot point presupposes a far more robust narrative, one that accounts for the cause of this novel onset of symptoms and explains the impact of this medical event on her life and our family. And, because illness narratives are ubiquitous in the Western literary tradition, her story is presumed to follow a predictable story arc: the onset of symptoms gives rise to a diagnostic quest that may be circuitous or straightforward but invariably leads to diagnosis, treatment, and one of three “resolutions,” be it cure, chronic illness, or death.
Whether or not it is ever formally written, illness is storied. It is plot-driven, temporally bound, populated by characters unforgettably dynamic and predictably flat. Illness is rife with conflict. Indeed, perhaps we ought to consider “human vs. disease” one of the central narrative conflicts, if not the conflict that unites all others—human vs. themself, human vs. human, human vs. society, and human vs. nature. They may have a beginning, middle, and an end, but illness stories are not predictable in the ways we so desperately want them to be. The causes of illness are often unknown and effects equally unpredictable. Narrative closure may never transpire.
A quick Google search for “infant head twitch” or “infant tics” swiftly leads to detailed descriptions of the symptoms, prognoses, and treatment options for Tourette’s Syndrome and infantile spasms—so-called “little seizures with big consequences” characteristic of the form of childhood epilepsy known as West syndrome. You can also find a handful of parenting blogs offering anecdotal evidence that some infants, particularly around seven months old, develop this head-to-shoulder twitch when experiencing teething pain, and that it often goes away soon after a new tooth appears. Teething, Tourette’s, or West syndrome? Or something else altogether? This, of course, is why we’re encouraged to avoid “Dr. Google” and WebMD—because the worst-case scenarios we encounter here are enough to make us sick if we weren’t already. But this is also why we should seek an explanation for our symptoms, since what might be relatively harmless—signs of teething, for example—might also be signs of a serious disorder that, if left untreated, can result in permanent brain injury.
Not knowing is its own type of dis-ease. Arthur Frank describes the experience as “chaos.” In The Wounded Storyteller: Body, Illness, and Ethics, first published in 1995, Frank posits that we rely on three narrative frames to structure our stories of illness—restitution, chaos, and quest—though chaos is better understood as “anti-narrative.” He writes:
Chaos is the opposite of restitution: its plot imagines life never getting better. Stories are chaotic in their absence of narrative order. Events are told as the storyteller experiences life: without sequence or discernible causality. … In these stories the modernist bulwark of remedy, progress, and professionalism cracks to reveal vulnerability, futility, and impotence.
To be without a diagnosis, “without sequence or discernible causality,” for my daughter’s tic was to be without a story, without any sense of what had happened or why or where we were going next. Piecing together a diagnosis—a story of cause and effect, a predictable sequence that both preceded and enabled prognosis and treatment—was inextricable from the process of healing.
If illness presents itself as a story, then it follows that healthcare providers ought to be skilled in narrative analysis, trained not only to listen to, but to hear patients’ illness stories. Indeed, since the 1990s, scholars working in the interdisciplinary field we now call the health humanities have insisted that the practice of medicine is as much narrative as it is bioscientific, and that stories are central to medical diagnosis and effective treatment. “No matter how scientific it may be, medicine is not a science as science is commonly understood: an invariant and predictive account of the physical world. Medicine’s goal is to alleviate present suffering,” Kathryn Montgomery insists in her foundational literary-ethnographic study of medicine Doctors’ Stories: The Narrative Structure of Medical Knowledge. “To explain what medicine is and to define the nature of its rationality, literature supplies a methodological analog more apt than either the natural or the social sciences,” she continues. From charting to morning rounds, morbidity and mortality conferences, and published case reports, patients and providers create and share stories to communicate the experience of illness and advance medical knowledge. Effective patient care—that is, both competent and compassionate care—thereby hinges on a provider’s “narrative competence,” Rita Charon contends.
Defined as “a sophisticated knowledge of how stories work,” narrative competence enables physicians to more “ably recognize patients and diseases, convey knowledge and regard, join humbly with colleagues, and accompany patients and their families through the ordeals of illness,” Charon explains in Narrative Medicine: Honoring the Stories of Illness. The narratively competent physician brings order to chaos by helping a patient to make sense of their illness story. This requires a physician to practice close listening, a skill that, much like close reading, requires focused, sustained attention to how a story is told—to the narrative dimensions of an illness story and not merely its plot—and the ability to contextualize the details, such as the onset and duration of symptoms, within a larger corpus of clinical knowledge. Close listening and narrative competence attend to the narrative features of medicine: a nuanced awareness of how temporality, causality, and contingency impact disease processes and the experience of illness, as well as a deep appreciation for the intersubjectivity and ethicality that underlie the sharing of illness stories and for the singularity of each patient’s unique illness narrative. The work of healing, if not the biophysiological processes of cure, is thus fundamentally narrative in practice. It depends on the skilled interpretation of patient narrative and the co-construction of a legible, consistent illness story—one that creates order out of chaos.
Following an anxious visit to her pediatrician, a telehealth consult with a pediatric neurologist, a night in the hospital, and an EEG, my daughter’s healthcare team settled on a diagnosis of benign paroxysmal torticollis, a “rare and underdiagnosed disorder of early childhood” possibly associated with migraines. Notably, BPT is a diagnosis of exclusion, meaning that it offers an explanation for symptoms once Tourette’s syndrome, West syndrome, and other disorders have been ruled out. Nearly three years later, I’m not sure that this medical narrative captures the full story. Now, I am not that kind of doctor, a disclaimer I repeat often among my physician colleagues and medical students, but I think torticollis, or even run-of-the-mill muscle tightness, makes more sense. About the time her symptoms appeared, my daughter discovered she could pull herself up to stand using just about anything, mastered hand-and-knees crawling, and insisted on climbing up the stairs herself. Nevertheless, the diagnosis of BPT is one that offered, to borrow from Frank’s taxonomy, a “restitution” narrative. These illness narratives follow a basic, optimistic storyline that rest on the ephemerality of illness and the inevitable return of health: “yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again.”
Even a potentially incorrect diagnosis offers the semblance of resolution and the reassurance that all will be well, but wellness itself need not depend on restitution. Frank suggests that the “quest” narrative is the most productive way to embody illness, though restitution “is the culturally preferred narrative.” Regardless of our preferences for neat narrative closure, restitution is impossible in the case of chronic and fatal conditions, and even in the case of brief or curable maladies, conflating narrative resolution with the restitution of health both erases and forecloses the more nuanced, complex ways that illness shapes self-identity and the course of our lives. Alternatively, by creating space to confront our frailty, precarity, and, ultimately, mortality, quest narratives encourage us to embrace contingency as opposed to closure.
This, in turn, decouples our understanding of “health” and “wellness,” as well as of “cure” and “healing.” And understanding wellness and healing as distinct from cure as the restoration of health encourages us to rethink our relationship to healthcare. When we accept that we cannot go back to the time before illness, before we confronted aging, mortality, or the cruel capriciousness of ill health, what we need from narratively competent providers is insight to guide the construction of a logical, consistent illness story. This story need not conclude with the return of health; even where cure is impossible, it is possible to live well with illness when the story makes sense. Rather, where illness is experienced as narrative chaos, narrative medicine—“medicine practiced with the narrative competencies to recognize, absorb, interpret, and be moved by the stories of illness,” per Charon—invites us to conceive of wellness as narrative consistency.
My daughter’s illness story might have ended very differently, and the truth is that just one night in the ER awaiting a diagnostic test that would confirm or deny whether her symptoms were evidence of a serious neurological disorder forever changed me as a parent. As Frank observes, “disease happens in a life that already has a story, and this story goes on, changed by illness but also affecting how the illness story is told.” That my “Baby Hulk” tweaked a muscle well before she could speak is utterly consistent with the motormouth toddler who pushes her limits at gymnastics each week, just as parenting this tiny human remains the most humbling and terrifyingly joyous thing I’ve ever done. Illness stories are not resolved and left behind—each unsettling symptom and quick recovery, each reassuring test result and devastating diagnosis, each triumph and fear becomes part of our life’s story. By holding space for these stories, narrative medicine honors the significance of sickness as well as health in shaping our sense of self and our understanding of wellness.