Reclaiming an Orphan Genre: The First-Person Narrative of Illness

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^Reclaiming an Orphan Genre: The First-Person Narrative of Illness* Arthur VV. Frank Once upon a not yet postmodern time, the question of why those who study literature and medicine should attend to nonfiction firstperson accounts of illness could have been answered directly: because what is told really happened. This answer still holds, but its meaning has changed. Then, the answer implied a crude challenge: do you want good fiction, or do you want to know what actually happens in the world of the ill? In postmodern times, that realist distinction has become naive. Poststructuralist and postmodern criticism deconstructs the distinction between fiction and nonfiction: both are texts, equally intertextual, equally formulating their own "realities" in their textual practices, and equally fictive in their claim of authorial presence. The respective preferences of academic disciplines for different genres—literary criticism for fiction, sociology for interviews and unpublished diaries— reflect not inherent properties of these texts, but rather legitimation practices of the disciplines: these preferences are aspects of how criticism and sociology preserve their boundaries and their claims to speak of the world in some singular way.1 Deconstruction makes sense of sociological prefaces stating that "identifying features" have been altered in quotations from interviews and that interview subjects are "composites."2 What line then separates these ethnographic composites from fictional characters? Might some fictional characters represent more literal reporting by being less composite than their ethnographic counterparts? The overlap of genres becomes greater, and readers become more sensitive to this overlap. So * My appreciation to Paul Brodwin and Anne Hunsaker Hawkins for their comments on an earlier draft of this paper; what was done with these comments remains my responsibility. Literature and Medicine 13, no. 1 (Spring 1994) 1-21 © 1994 by The Johns Hopkins University Press THE FIRST-PERSON NARRATIVE OF ILLNESS I repeat my initial question: in this new world of texts can any unique claims be made for the nonfiction first-person account, which I will now simply call the illness narrative?3 The illness narrative is an orphan genre.4 In early issues of Literature and Medicine illness narratives were not reviewed; only notes to illness narratives, not whole studies, can be found. Physicians writing about their own illnesses get slightly more attention than other firstperson authors, but not nearly as much as physicians writing about their patients. Exceptions can certainly be found, but it is fair to say the academic literature has a marked dispreference for people writing about their own illnesses.5 This dispreference is predictable. The illness narrative's condition of possibility is a level of medicine that extends the lifespan after the onset of serious illness, allowing both reflection on illness and energy to write these reflections down.6 But this same medicine, as Michel Foucault most vividly describes, is based on subjecting the ill person to the gaze of the other.7 The truth of the case is to be found in the physician's examination, and whatever the patient has to say becomes residual. Many distinguished physicians throughout medical history have certainly emphasized listening to the patient, but this only proves my point: the logic of medical practice is such that doctors have had to be reminded of what should, from a naive perspective, be central to medicine. Observing the neglect of the illness narrative does not, however, address the question of the positive claim of these narratives. I mean the strong claim: what do illness narratives provide that other texts cannot? The answer is their truth, but not the undeconstructed truth of reportorial accuracy. In postmodern times the truth of illness narratives is both more complex and more spiritual than any simple claim to the privilege of personal experience. Personal experience is the issue, but its claim is anything but simple. My argument begins with some historical considerations of how culture turns experiences of illness into narrative and provides three basic voices for telling narratives of illness. I then discuss the ill person as a narrative subject, building on the psychoanalytic insights of Jacques Lacan. Finally I ask what demands illness narratives make on readers, both as students of the social construction of illness experience and as fellow human participants...