Note: I wrote the following at the request of the editors of Narrative Inquiry in Bioethics, to be posted on their website accompanying the Voices series of first-person illness stories of illness and care. Although I refer specifically to that series, I’m talking about most any personal stories about illness.
Reading and Responding to Stories of Illness & Care
Arthur W. Frank
The stories in the Voices series are told in many voices, and each raises particular issues. What I try to offer here are some general questions that might be asked when reading any of these stories.
For those who read the Voices stories by themselves, these questions can assist in interpretation and maybe introspection that the stories instigate. For those reading in groups, these questions can facilitate discussion. I recommend groups being open to allowing one story to lead to another. Often, the best response to a story is to tell another story.
People tell stories for multiple reasons. Stories told by ill persons and caregivers tend to have some combination of three core goals:
How is the story a call for recognition? If told by an ill person, recognition may be for the dislocation, pain, and specific sufferings that the storyteller has been through. Caregivers, including family, friends, and professionals, also suffer in their work and often feel their work places fail to recognize this suffering. Thus, a further question: Is telling this story in part a response to the reluctance or inability of certain other people (who?) to offer that recognition? What inhibits that recognition?
How does the story offer guidance to those who may follow the storyteller and have similar experiences? This guidance is sometimes direct advice, but more often it involves modeling an attitude toward illness and treatment that is the storyteller’s hard-won wisdom, after a period of searching. The story says, implicitly: This is who I have learned to be, as best I can be, in the circumstances that I invite readers to share.
How does the story call for change, most often in practices of health care? If the story depicts some people acting badly, what are the cultural or institutional bases of that bad behaviour? What needs to change, to avoid suffering that seem unnecessary?
In asking these questions, I recommend keeping two issues in mind.
We talk about someone finding their voice in a story, or the story as their own. That’s true in one sense: stories are told not simply to report, but also for the storyteller to discover who they can be, as the one who can tell this story (“I tell, therefore I am”). But what people find is not a singular voice.
Stories are told in multiple voices, and most of those voices are borrowed. Thus ask: in how many voices is the storyteller speaking? Some of these voices express conventional roles, e.g., patient or parent, spouse or professional.
Other voices express discourses. Any illness story begins with medical-scientific language and narrative framings. These are variously rejected, adapted, and added to. Another discourse is what I’ve called quest narratives in which illness and suffering are occasions for enhanced appreciations. Or, stories can be spoken in a discourse of political opposition to practices that cause illness or increase the ill person’s troubles.
Again, listening requires learning to hear multiple voices, expressing multiple discourses. How do each of these voices and discourses serve the storyteller? How well or badly do they serve? Is part of the story about having learned to silence certain voices that serve badly?
Illness stories involve multiple resistances. The storyteller has to overcome both internal and often external resistances to telling certain truths about illness and care, or lack of care. Listeners bring their own defenses, including everyone’s fear that the storyteller’s troubles could become my troubles, and the professional’s resistance to hearing about inadequacies of care.
Paradoxically, it is our resistances to illness stories that also draw us to them: we want to hear the stories but also fear hearing them. Listening gets serious when the listener becomes self-conscious about developing a sensitivity to his or her own resistances--noticing them and enlisting them as key allies in understanding.
Ask yourself: what parts of the story am I most concerned to marginalize or somehow deny? The parts of the story that we initially ignore or reject are often those that we most need to hear. In group discussions, ask what certain resistances say about who the group is and its presuppositions?
Finally, it’s often that there isn’t any right/wrong in responses to a story. Again, I find that a half truth. The true part is that stories evoke multiple responses, even mutually contradictory responses. One lesson of some stories is that both sides of a contradiction can be true. But, some responses are wrong in that they fail to account for aspects of the story that are clearly there. Another quasi-paradox: storytellers don’t necessarily get everything right, but interpretations & responses need to acknowledge all parts of the story and why telling it that way is necessary for the storyteller.
Arthur W. Frank has been writing about illness since his own memoir of cancer, At the Will of the Body (1991). His books include The Wounded Storyteller (1995; second edition 2013) and Letting Stories Breathe (2010).