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When Dr. Arthur Kleinman was a medical student he cared for a seven-year-old girl who had been badly burned and had to endure removal of her burned skin daily, which was excruciatingly painful. Kleinman’s attempts to distract the girl during these ordeals were ineffective, until on one occasion he asked her to tell him how she was able to tolerate the painful procedure day after day. From that point on, rather than screaming and fighting her doctors, she tried to describe to Kleinman what the experience was like for her. Kleinman later wrote: “But whatever effect I had on her, her effect on me was greater. She taught me a grand lesson in patient care: that it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value.”[1]
Illness, especially illness that doesn’t go away, creates a profound disruption in a person’s life. Although we are aware that change happens continuously and no two days are completely alike, when we’re healthy we have expectations that our lives will continue tomorrow pretty much the way they do today. We get used to believing that our bodies will function the same from one day to the next and we’ll be able to accomplish what we’ve set out to do. But chronic illness destroys those expectations; ill bodies are no longer dependable or predictable and may even feel like an enemy. Many plans, both near-term and far, may need to be put on hold or abandoned altogether.
Chronic illness can create chaos in people’s lives. For many people, it’s like a fracture that splits a person’s life into a Before and After. Before the symptoms appeared or the diagnosis was confirmed, life may have seemed manageable, familiar, and predictable. Afterwards, nothing feels familiar, uncertainty pervades every part of life, and it may not be possible to predict things as basic as what your energy level is going to be on any given day.
For some people, the chaos never goes away. No purpose can be found in suffering and no way is discovered that will help re-establish order or control in this distorted new life. But others are able to view their ordeal (at least some of the time) as a type of journey, whether it is physical, emotional, spiritual, political or moral. And from this standpoint they find a platform from which to tell their story with purpose, even as the story unfolds. They do this not to display their own heroism in the face of adversity or to offer hope and a happy ending to others in similar straits but because their illness has changed them, and telling their story becomes a way for them to discover how they have changed.[2]
Telling a personal illness story to others can help the ill person in a number of ways. First and foremost, the creation of a narrative to describe an illness experience helps bring order to the chaos. If illness is a journey, it is one that makes a mess of the planned route. Describing what it’s like to take that trip helps people remember significant points along the way that, when looked back on, can add up to a coherent story. Telling the story, in effect, takes the disconnected fragments of the illness experience and creates a story out of them, one that points to a new destination. Roger Schank, a psychologist who has written about story and memory says, “We need to tell someone else a story that describes our experience because the process of creating a story also creates the memory structure that will contain the gist of the story for the rest of our lives.”[3] Telling the story helps create a new map for the ill person, a picture of what happened, when it happened, who was there, and how the ill person responded to it all. Without the story there is no map.
A second benefit of illness narratives is the value they provide to others who are struggling with a chronic illness. Patients usually get information about their disease and how it’s treated from their healthcare team. But patients have other needs as well, such as dealing with their emotions, reactions of family members, side effects of treatment, comments from strangers, fears of disability or death, and living with uncertainty. There’s no substitute for hearing an illness story from someone who’s been there and can speak realistically about what it has been like.
But it’s not only people with chronic illnesses who can benefit from reading or hearing illness narratives. Healthcare professionals, especially physicians, would learn much more about their patients and the illnesses they have if they would attend to the lived experience of those they treat.
What the ill person pays witness to is worlds away from what medical descriptions of disease and treatment convey. Unfortunately, the lived experience of the patient is usually ignored by medical practitioners. As a result, aside from telling the doctor about symptoms, little is asked of the person who has the disease, other than to be still and well behaved while being acted upon. The result is that the doctor never learns about the effects of the illness and its treatment on the individual or what preferences the patient has around quality of life issues. This happens even though patient-centered care and shared decision making are currently considered important components of quality healthcare.[4] This can create a rift between the agenda that the patient has and the one that the doctor applies.
Educating physicians and other healthcare personnel about preferred ways to communicate with patients is a complex and long-term endeavour. But it is a necessary component for the well-being of patients with chronic illness. And it is no less important for the practitioner. As Kleinman states, when the patient’s experience is included in the conversation, “Practitioner becomes a moral witness, neither a judge nor a manipulator. Patient becomes an active colleague, not a passive recipient. Both learn and change from the experience.”[5]
In fact, because most of us will become chronically ill at some point in our lives, reading or listening to illness narratives benefits us all. We will all travel that road at some time or assist someone else who has to travel it. Learning what it has been like for others can help prepare us for what we will face.
A third benefit of illness narratives is that creating a story that others can read or hear reduces the isolation that ill people often experience. Medical care is almost always delivered to individuals, sometimes with a family member in attendance, but rarely in the company of other people who have the illness. As Arthur Frank says, “The danger for ill people is that they are often taught how to be ill by professionals.”[6] So after the diagnosis is made, ill people will know what treatment plan they’ll be on, but they will probably not hear anything about how to incorporate their illness into their life story. And since most serious chronic illnesses affect every part of a person’s life, the effects will be widespread and profound.
Additionally, when patients tell their story to others they help promote understanding of the lived reality of their illness. They connect with others who have the same illness and open up lines of communication that can provide emotional support.
By telling their story ill people also confront the stigma of illness and disability head on, challenging stereotypes and societal assumptions about how ill people should act, feel, and talk. People with visible illness or disability are often stared at, patronized, ignored, or spoken about as though they can’t understand speech. Those whose illness is invisible, such as chronic pain patients, often find that their experiences are not believed because they don’t “look sick” and they are often told to “snap out of it” or “you’ll feel better if you just change your attitude.”
It is rare for a person with a chronic illness to have the opportunity to tell their story without the listener interrupting the narrative. Listeners often want to offer help by suggesting alternative treatments or specialists or recounting the experiences of others who had “the same thing.” What many healthy people don’t understand is that often the best way they can help is by listening to the ill person’s whole story without interruption.
The offer of unsolicited help may often be a response to the listener’s discomfort or fear. Healthy listeners may cut the story short so they can offer the ill person a solution that they believe will lead to a happy ending. But it also results in a false narrative for the ill person. The listener may feel better, but the ill person is left feeling more isolated than before.
When we become patients our vulnerabilities are exposed. The medical care system (temporarily) removes from us our clothes, home, biography, and even our name--things that protect us and identify us as individuals. In exchange we become part of the medical narrative, bending to its routines, rituals, accepted behaviors, and timetables.
By telling her illness story, an ill person not only reclaims her identity but also creates a narrative that helps put her world back together. Arthur Frank calls ill people “wounded storytellers” to minimize victimhood and instead emphasize activity. He says, “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability.”[7]
[1] Kleinman, Arthur. The Illness Narratives: Suffering Healing, and the Human Condition. New York: Basic Books, Inc. 1988, xii.
[2] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: The University of Chicago Press, 1995.
[3] Schank , Roger C. Tell Me a Story: A New Look at Real and Artificial Memory. New York: Scribners, 1990, 115. Quoted in Frank, Arthur W. The Wounded Storyteller, 61.
[4] Ospina NS, Phillips KA, Rodriguez-Gutierrez R, et al. “Eliciting the patient’s agenda--secondary analysis of recorded clinical encounters.” Journal of General Internal Medicine, 2018. Published online July 2, 2018. https://link.springer.com/article/10.1007%2Fs11606-018-4540-5
[5] Kleinman, Arthur. The Illness Narratives, 246.
[6] Frank, Arthur W. The Wounded Storyteller, 159.
[7] Frank, Arthur W. The Wounded Storyteller, xi.
