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Thursday Review: “Restoring the Patient’s Voice: The Therapeutics of Illness Narratives”

The bulk of my work is wrapped up in teaching how stories can be useful in clinical situations. I believe that stories and storytelling make life better and more meaningful. I tend, though, to downplay narrative work that can’t explicitly help doctors, nurses, and administrators serve patients more effectively. I suppose that comes from a need to show healthcare professionals the value of medical humanities.

The way that Dr. Jurate A. Sakalys writes about the need to simply let patients talk, though, is a good challenge for me. Writing in the Journal of Holistic Nursing, Sakalys brings up several themes which have come up in the context of patient-provider communication. The focus of the article, though, is on why those narratives are healthy for the patient.

Patients understand that there are two broad aspects to medical encounters: the medical and the personal, the objective and the subjective. A patient is unlikely to put it quite that way. They still understand that there’s a difference between how we talk about a pathology and how we talk about a person.

Being a patient with a serious illness is extremely depersonalizing. Sakalys’ article is full of different ways of describing this, including descriptors like the ontological assault and being a spectator to your own drama.

As someone who has lived through a serious illness, I know that there is a disconnect between the medical reality and personal experience. This happens with even the kindest, most well-meaning physicians. I got a little emotional when I read how Frank described this:

Talking to doctors always makes me conscious of what I am not supposed to say. Thus I am particularly silent when I have been given bad news. I know I am supposed to ask only about the disease, but what I feel is the illness. The gap between what I feel and what I feel allowed to say widens and swallows my voice. … The more extreme the situation, the more time and help I need to say anything. … The time when I cannot immediately put something into words is usually the time I most need to express myself.

I’ve never been able to articulate it in quite this way, but it’s true. Thinking back on my experiences with all the doctors I encountered, there was always a conditioned distance between me and the professional.

I had read about the difference between a “disease” and an “illness” before. A “disease” is a pathology. It’s a condition described in a textbook that my doctors and I talk about almost as if it were waiting outside in the hall. An “illness” is everything a patient goes through, even though the disease is the only thing discussed.

When I read Sakalys’ article, I think I actually understood for the first time that this distinction between illness and disease is not a sociological and communicative construct. It happens to all of us when we talk to a healthcare provider.

The author identifies that patients are aware of this distinction, even if they can’t consciously articulate it in quite this way. Sakalys cites a 1993 study1 which reported on patient satisfaction surveys revealing that patients express satisfaction with the technical quality of care, but that their subjective needs often remain unmet and their individual identities frequently are unrecognized. These findings relate back to Marvel and Barry’s work on patient agendas. In both cases, there was nothing wrong with the physician’s technical ability. The patients weren’t able to fully express their individual agendas, though.

In light of the difference between medical reality and personal experience, between what we want to talk about and what we actually talk about, Sakalys introduces the article’s main theoretical concept. Sakalys uses Bruner’s separation2 of the narrative mode and the analytic mode.

Neither one is better than the other, but they each serve different functions. The analytic mode is used in medicine, and is responsible for the diagnosis and treatment of disease. The narrative mode is used to make sense out of those medical events. Each is an organizing framework.

I find this idea of “modes” particularly useful. This way of separating out what happens in clinical situations is a great place to start thinking about some important questions:

  • How do we maintain that medicine is correct in its objective, scientific approach, while maintaining that the patient is more than a mere medical object?
  • How do we help both professionals and patients see that they each have an area of expertise? Without the healthcare professional’s expertise, there’s no care. Without the patient’s knowledge of their own symptoms, goals, etc., care becomes aimless.
  • In the context of the healthcare provider’s expertise, how do we help all sides see that the patient needs to be able to speak freely, both for the sake of their own diagnosis and care, and for their mental well-being?
  • How do we avoid zero-sum thinking? In other words, how do we help everyone get away from considering decisions as provider vs. patient, or even medicine vs. humanities?

Sakalys spends a good amount of time in the article discussing how a serious illness is really a disruption in a patient’s autobiography, even using the vivid term narrative wreck.3 The preillness biography is no longer a trustworthy reference point, and a new story is needed both to deal with the threat of death and to integrate the illness into a person’s idea of themselves.

For this reason alone, the narrative mode is a necessary part of medical care.4 I maintain that narrative and storytelling can also be a tool to aide in analytical thinking. This idea of modes is useful in this sense. Healthcare providers don’t have to give up the analytic mode, quite the opposite. Analytic thinking is all about listening as experts listening for diagnostic information, which is good and necessary. Narrative thinking, however, is listening for the patient’s meaning rather than for facts.

Thus, both analytic and narrative thinking are necessary for optimal care and caring; the use of narrative thinking does not require the [professional] to reject medical thinking or evidence-based nursing.

Analytic thinking is one dimension of listening. Narrative thinking is another dimension. Both can coexist, and teaching healthcare professionals narrative competency means teaching them to listen for diagnosis and for meaning. This dual-dimensional thinking is certainly not easy, but it is absolutely possible. Professional training aims to make the analytic mode routine. In the same way, our minds are built to make stories: to pick out events and to connect them into meaningful wholes.5

If we can train the medical mind to hear diagnostic facts and narrative whole, we can simultaneously care for patients holistically and deepen our therapeutic powers.

Sakalys’ paper is aimed primarily at nurses. This is certainly understandable. Nurses spend time with patients in ways that physicians (for example) don’t. Sakalys emphasizes that a person’s medical story continues to unfold throughout treatment. As mentioned, in medical situations it’s difficult to know how to give our thoughts and experiences language right away. For these reasons, nurses can be witnesses to and agents for a patient’s story.

Instead of calling for “Narrative Therapeutics”, the author often prefers to call this kind of patient processing “illness talk”. “Therapy” is a big word, loaded with a medical and psychological background of pathology and treatment. Illness talk is simple, and can be implemented almost immediately with any medical professional. Illness talk also can’t be a substitute for psychotherapy.6 What is important in illness talk is the ability to listen without immediately filtering what the patient has to say solely through the analytic mode.

While nurses have a special opportunity to encourage and listen to illness talk, every kind of professional can benefit from it. Some of the keystones of illness talk have already been mentioned in other contexts, including

  • providing the patient an opportunity to be heard
  • asking open ended questions, listening with a minimum of interruptions, and giving control of the dialogue to the patient, and
  • developing a shared narrative that becomes the foundation for joint action7

One of the exciting things about this article is that Sakalys talks about storytelling in some of the same ways that that come from my background. I always try to emphasize the structure of stories. That is, that stories are usually (but not always) chronological, that a “story” selects events from a larger “narrative”, and that the way those elements are selected is what ultimately makes meaning.

You can imagine my delight at reading this:

Common to most definitions of narrative thinking and dialogue is an emphasis on the temporal ordering of events associated with change or transitions,8 distinguishing narrative from other forms of discourse by its characteristic properties of beginning, middle, and end. However, narratives are not only chronicles of events; rather, they configure or plot both chronological and nonchronological events and experiences into meaningful wholes,9 as illustrated by Taylor:10

Stories link past, present, and future in a way that tells us where we have been, where we are, and where we could be going. … [They] turn mere chronology, one thing after another, into the purposeful action of plot, and thereby into meaning. … If nothing is connected, then nothing matters. Stories are the single best way humans have for accounting for our experience. They help us to see how choices and events are tied together, why things are and how things could be. (p. 2)

When a person tries to answer the question, “What does this illness mean?” There are two basic options.

The first is the “medical metanarrative”. That is, the scientific, social, and cultural narratives that aren’t about the patient as a person and an individual. These metanarratives are important. They have to do with our understanding of medicine as a scientific endeavor which moves a patient from disease to treatment to health again. The danger, however, is that these metanarratives can be internalized as valid descriptions of self and experience. In other words, when a patient is very ill, it’s easy to become wrapped up in viewing oneself as an “it”, a thing which exists only as a pathology to be treated. This makes sense: the disease tends to be the dominating topic of conversation.

The other option is the patient’s own meaning, derived from how they come to understand the illness fitting into their life. This takes tremendous energy, because the overwhelming focus of fighting an illness becomes not “me” but “it”: the disease and pathology and treatment.

A patient’s ability to tell their own story, not the medical metanarrative, takes time, effort, and reflection. In the same way, being able to listen to a patient’s story not in terms of the medical metanarrative and analytic mode takes effort. If we can, though, our ability to be human and to be effective in the clinic comes alive.


The article reviewed: Sakalys, Jurate A. “Restoring the Patient’s Voice.” Journal of Holistic Nursing 21, no. 3 (September 22, 2003): 228–41.

1 Gerteis, Margaret, Susan Edgman-Levitan, Jennifer Daley, and Thomas L. Delbanco, eds. Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care. San Francisco: Jossey-Bass, 1993.

2 Bruner, Jerome S. Acts of Meaning. Cambridge, MA: Harvard University Press, 1990.

3 Dworkin, Ronald, quoted in Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995.

4 Shapiro, Johanna. “The Use of Narrative in the Doctor-Patient Encounter.” Family Systems Medicine 11, no. 1 (1993): 47–53.

5 Hess, Joanne D. “The Relational Narrative: A Postmodern Ethic for Nursing.” Unpublished University of Colorado dissertation, 2001.

6 Heiney, Sue P. “The Healing Power of Story.” Oncology Nursing Forum 22, no. 6 (1995): 899–904.

7 Kirmayer, Laurence J. “Broken narratives: Clinical encounters and the poetics of illness experience.” in Narrative and the Cultural Construction of Illness and Healing, edited by Cheryl Mattingly and Linda C. Garro. Berkeley: University of California Press, 2000.

8 Hydén, Lars-Christer. “Illness and Narrative.” Sociology of Health & Illness 19, no. 1 (June 28, 1997): 48–69.

9 Hess, Joanne D. “The Relational Narrative: A Postmodern Ethic for Nursing.” Unpublished University of Colorado dissertation, 2001.

10 Taylor, Daniel. Tell Me a Story: The Life-Shaping Power of Our Stories. St. Paul, MN: Bog Walk Press, 2001.

Featured Image: Spring Magnolia Buds, used under a CC0 1.0 license (the work is in the public domain)