The urge to describe the experience of illness is often met by the desire to fix it.
Everyday life with chronic illness can oftentimes be overwhelming and chaotic. The uncertainty of what bodily challenges may occur can diminish a person’s sense of control over their own life. The unpredictability of managing chronic illness and the physical and emotional challenges that come with the ups and downs can be difficult to describe to others.
Illness narratives with a tidy resolution ingrained in their plots may be easier to follow, but life often eludes a neat, linear form. Chronic health conditions introduce additional challenges to life others may not see. This can be a barrier for those wishing for their chronic illness experiences to be understood by a friend, family member, or even a healthcare professional. In his book on narratives and illness, The Wounded Storyteller, sociologist Arthur Frank examines various ways of interpreting illness–some at times more helpful than others when it comes to dealing with the uncertainty, ambiguity, and unpredictability that can accompany illness.
Frank describes three main forms of illness narratives: restitution narratives, chaos narratives, and quest narratives. He describes the linear structure of restitution narratives as follows: "The plot of the restitution has the basic storyline: 'Yesterday I was healthy, today I'm sick, but tomorrow I'll be healthy again'” (77). The chaos narrative is, in many ways, an anti-narrative as it lacks any kind of satisfying conclusion, without much of a sequential link between the events being depicted. Amidst chaos, a person may lack enough distance from the events to enable much reflection or ability to come to terms with any kind of order plot. Quest narratives are about the lessons or deeper meanings that have accompanied the illness experience.
Frank’s study highlights how the narrative form of diagnosis, treatment, and recovery–a restitution narrative–is the form of narration that people can most easily listen to and understand. However, the twists and turns of life with a chronic health condition do not easily fit into the strictly linear forms of narration. Frank states, "Getting out of chaos is to be desired, but people can only be helped out when those who care are first willing to become witnesses to the story" (Frank, 110).
Unanticipated setbacks and unexpected triumphs do not fit neatly into a succinct, straightforward story line. In her book Good Days, Bad Days, Kathy Charmaz recounts an interview with a woman named Nancy with chronic illness who lives with her mother who has Alzheimer’s disease. Of the constant challenge of her experience, Nancy says:
“And if I’m trying to get dinner ready and I’m already feeling bad, she’s in front of the refrigerator. Then she goes to put her hand on the stove and I got the fire on. And then she’s in front of the microwave and then she’s in front of the silverware drawer. And—and if I send her out she gets mad at me. And then it’s awful. That’s when I have a really, a really bad time” (Charmaz, 1991, 173 cited in Frank, 99).
The rapid repetition of “and then and then and then”’ in this story reflects the chaos experienced, as if the narrator can barely find space for a breath (Frank, 99). Devoid of consistent plot, the lived chaos makes it difficult, at times, to communicate what living with chronic illness is like to others, including one’s healthcare practitioner.
Arthur Frank’s The Wounded Storyteller can be seen as an investigation into the challenge of authentic and relatable narration during the struggle of everyday life with chronic illness. Sound communicative relations with others can be supported through the acceptance of chaos and spontaneity while distancing from stereotypes not accurately reflecting one’s own experience. Heroic restitution narratives of the patient confronting the obstacle and overcoming it through a miracle cure and living on in happiness may perpetuate unrealistic expectations.
Opening to alternative narrative patterns requires an acknowledgement of the dynamic personal, professional, and emotional aspects of a person’s being that are entangled with chronic illness. Frank highlights how the metaphor of illness as a journey is more open to the varying highs and lows of sustained illness:
Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience (Frank, 115).
Here, adaptability and resilience are given breath throughout a winding journey, rather than being forced into a linear structure toward fixes, cures, and normal function. Frank draws on Joseph Cambell’s mythological studies to highlight a narrative structure of quest stories: departure, initiation, and return (119). Reflected in terms of a chronic health condition, the departure may be the emergence of symptoms or diagnosis, initiation as the experience of suffering and a changed life, and a return to oneself alongside the altered world enforced by illness. This doesn’t necessarily mean the return to life as it was before illness. As Frank suggests, “the quest hero accepts contingency because the paradox learned on the quest is that surrendering the superficial control of health yields control of a higher order . . . [thus fostering an] open[ness] to crisis as a source of change and growth and valuing contingency even with its suffering” (126).
With the end goal of return, the idea is re-emphasized that thinking of illness as a journey doesn't necessarily imply a final mountaintop destination of recovery ever after. Rather, like Homer's Odysseus, return involves a journey toward some general homeland of the heart, infused with a personal response to the question of how to live that evolves over time.
Bibliography
Charmaz, Kathy. Good Days, Bad Days: The Self in Chronic Illness and Time. United States: Rutgers University Press, 1991.
Frank, Arthur. The Wounded Storyteller: Body, Illness and Ethics. 2nd ed. Chicago, IL: The University of Chicago Press, 2013.