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July 2005 The
Power of Storytelling — Inspiring Diabetes Self-Management Diabetes is about much more than blood glucose and lipid levels. It is part of a life story. Life is lived and understood as a story. Diabetes is a patient-managed disease that must be integrated into personal lives.1,2 Stories help personalize diabetes, removing it from the academic or purely biomedical realm into its true arena, that of a lived experience. In the midst of chronic illness, people instinctively seek personal meaning. Meaning does not change the events of our lives, it changes our experience of those events.3 Newly diagnosed with type 2 diabetes, a person might see the condition as the end of the good life while others may view their diagnosis as the beginning of a better, healthier life. Resulting experiences are likely to confirm the perceived meaning, thus the expectation becomes the proverbial self-fulfilling prophecy. The dietitian serves clients well by helping them see how diabetes can fit into their lives. Stories provide an excellent tool for the process of integration. Cognitive psychologists describe how the human mind, in its attempt to understand and remember, assembles bits and pieces of experience into a story, beginning with a personal desire—a life objective—and then portraying the struggle against the forces that block that desire.4 Most people with diabetes could easily fill in all the blanks of this formula. Usually, the personal desire is for a fulfilling life. Life objectives include an endless list of heart’s desires: education, specific jobs, marriage, children, travel, hobbies, events, and friends. Diabetes can be seen as the force that could block the path to achieving the coveted objectives in life. The rationale for using storytelling in diabetes education is threefold: • Stories can promote better understanding between healthcare providers and patients because stories communicate the patients’ subjective experience of having diabetes. • Stories clothe theory in humanity, making theory more accessible to the patient in human application. • Stories help people shape, understand, and articulate their personal philosophy, which provides strategic direction for behavioral choices. Storytelling Promotes Better
Understanding Between Healthcare Professionals and Patients The concept may help explain the frustrated communication that sometimes occurs between healthcare providers and patients. If the healthcare provider orders experience and constructs reality through the logical mode, then diabetes may be viewed as scientific. The patient may perceive that the healthcare provider is only interested in objective reality as measured by blood glucoses and weight. Patients are more likely to construct their reality in a story mode that proves truth through its similarities to their everyday experiences with life. The reality of diabetes for people directly affected by it is both the objective reality of numbers and the subjective reality of integrating a disease into one’s work, family, social, and personal life. The patient’s interest, ultimately, is in the subjective quality of life, uniquely defined by each individual. Effective communication between healthcare provider and patient requires awareness of both modes of thought. Patients can tell their stories, including both the objective and subjective experience of having diabetes. By listening carefully, healthcare providers can learn about their patients as human beings. By weaving the human element into their dealings with patients, healthcare professionals can build a mutually satisfying working relationship. In an article in Storytelling, Daniel Dahlquist says, “Storytelling [is] the oldest system for transmitting learning and culture in the world. A teacher is a storyteller, a keeper, and a perpetuator of the myths that show us all how to live.”6 Storytelling in both interpersonal and intrapersonal communication helps people gain insight into who they are and learn how they can share their own experiences with others. Strength and determination are important personal qualities for all of us but are especially useful when people are diagnosed with a disease that poses, for them, a Herculean task. Dietitians could say to their clients, “You know, as we are talking, I am reminded of the story of The Little Engine That Could. Have you ever overcome a challenge that at first seemed just too great?” Often, that question is enough to get someone in touch with a previous experience they can relate. Remembering an experience of overcoming an obstacle helps people build on prior success and believe in future success. Similar stories from the cultures of the people you serve may be beneficial, but you are likely to find that attributes of strength, courage, faith, and determination transcend gender and culture differences. Stories Clothe Theory in Humanity Lucy, the delightful Peanuts cartoon character created by Charles Schulz, had a notoriously difficult time catching the baseball. In one hauntingly memorable cartoon, Lucy said, “I was in center field and I saw the ball high in the air. I got under the ball and held my glove in position—confident that I would catch it—when suddenly all my memories of missed catches flooded my mind. I missed the ball. My past got in my eyes.”8 Explaining concepts through stories can help people come to a meaningful and personal understanding of the theory. Storytelling Illuminates and
Shapes Personal Philosophies Storyteller Joseph Campbell described the hero’s journey after studying heroes throughout history—from the Bible, Greek mythology, and virtually every culture. Campbell said all people are heroes or heroines making their unique journey through life. According to Campbell, people are transformed through trials and revelations. The hero is transformed by the tests and “illuminating revelations” encountered on his journey.9 Just as Luke Skywalker had Obi-Wan Kenobi as a guide for his journey in the movie Star Wars, Campbell’s classic hero has a guide. Today’s diabetes healthcare team plays the role of guide for its patients’ heroic journeys with diabetes. Patients, encouraged to tell their personal stories, assist the team in early identification of problems—marital difficulties, problems at work, illness in the family, financial concerns—that may compromise efforts at diabetes management. The use of story helps uncover the real reasons why people are having difficulty self-managing their diabetes; they are having difficulties with life. A timely referral to a program or resource that teaches life skills (self management) and facilitates their integration into one’s life can smooth out the path of an otherwise bumpy, difficult journey.10 Knowledge does not change behavior. Lifestyle habits are rarely improved by dietary guidelines. Today’s dietitian can “take the recommendations and turn them into practical, customized advice that our clients can realistically incorporate into their lives,” says Dina Aronson, MS, RD, in an article in Today’s Dietitian.11 By listening to clients’ stories, dietitians can help solve barriers to healthy lifestyle habits. Asking questions about life values can help both the dietitian and the client uncover the motivating force behind healthy choices. A severely overweight woman started on a successful weight-loss/maintenance program after watching her grandchild playing one day. She realized how much she wanted to live to see her granddaughter grow up. “We will water the thorn for the sake of the rose.” (A Kanem proverb) Assisting patients in developing their personal philosophy is a counseling function. Counseling can be viewed as education about one’s personal life. Counselors do not tell people how to live their lives; instead, they ask questions that guide people toward self-understanding, values clarification, self-resolution of problems, and goal attainment. People can benefit from skillful guidance as they learn how they can become the authors of their own stories. Diabetes cannot be erased from the script, but the experience people have with diabetes is a choice. Diabetes cannot be left outside of people’s life stories. People may view clinic appointments as separate from their real lives—time taken away from normal daily activities. There can be a danger in that viewpoint if it means that the education and therapeutic recommendations stay in the clinic office as the patient heads for the parking lot to resume life. The value in storytelling is in helping patients stay connected to life while they integrate diabetes management into it. The clinic appointment can be used as an opportunity to step back and observe one’s life, following the story through past difficulties and anticipating the challenges in the next chapter. In this way, reviewing resolution of the problems in the past can illuminate current choices to prevent future problems. Classes and group appointments can provide collective wisdom for problem solving and prevention. As people tell their stories, they find the common ground of their shared humanity. Differences in personal stories melt away as participants discover universal themes, goals, and yearnings. “We all may have come on different ships,
but we’re in the same boat now.” (Martin Luther King,
Jr) Of chronic diseases, we know diabetes is one of the most patient-managed. Stories help introduce humanity as the context for diabetes management. Diabetes is about people’s lives. That focus is sometimes lost in blood glucose results, reports of blood lipids, and other medical concerns. Stories help keep the focus on the people who have the disease and do the majority of its daily management. Stories help both the dietitian and the patient gain insight. “Those who would rightly understand someone must first read the whole story.” (A proverb) Urban Rosenqvist, MD, PhD, of Sweden spoke at the 2003 International Diabetes Federation meeting in Paris. A professor of social medicine, he reported on his (as yet unpublished) research that shows that diabetes education that focuses on the person is more effective in managing diabetes than programs that focus on diabetes. Personal stories help reveal cultural influences, family traditions, habits, values, beliefs, and other aspects of personal history that can affect diabetes management. By telling their stories, people can gain important and helpful insights. “Using the stuff that bubbles up from early emotional experience empowers. Emotional beliefs and meanings can be amended or removed … the empowerment happens as more of the self becomes available to self.”12 In telling his family stories, a man received important insights into his obesity when he recalled the day his mother took all their cat’s newly born kittens to the humane society. The heartbroken children were comforted with ice cream. Today, the man is a trim runner as he turned to exercise for stress management. Even very short stories can bring wisdom to help people gain personal insights. A story is told of W.C. Fields sitting on his front porch, reading the Bible. A friend of his stopped by to visit and noticed Field’s unusual activity. “Bill!” exclaimed his friend, “I must admit that I am amazed to see you reading the Bible.” Fields responded, “Just looking for loopholes.” Perhaps the current “recommendation” of the health benefits in dark chocolate, almonds, and red wine can be viewed as one big loophole that begs for expanded clarification.13 Metaphor can be a useful storytelling format if people are uncomfortable with direct self-disclosure. A hospital chaplain found that metaphor helped men talk about their feelings. Because he had found little useful response to his question, “How are you?” he turned to metaphor. He found a mechanical or sports metaphor worked well. The question, “What inning are we in? How does it look?” might bring responses such as: “It’s the top of the seventh. I think we’re going to do it,” or “It’s the bottom of the ninth. It doesn’t look good.” That telling response can lead to appropriate intervention. The following aphorism can have far more impact than a lecture that could sound preachy or authoritarian: “A man too busy to take care of his health is like a mechanic too busy to care for his tools.” (A proverb) Similarly, the value of education can be effectively communicated by the quote: “I am no longer afraid of storms for I am learning to sail my ship.” (Louisa May Alcott) Stories speak to people wherever they are on their own personal journey. The same story heard by a dozen people can awaken a dozen different personal stories. A person’s unique history and experiences influence what they hear. However, even with unique, personal application, there is a universality to stories that endure. Robert Coles, a professor of psychiatry and medical humanities at Harvard Medical School, explains the essential quality of storytelling in this way: “The sine qua non of storytelling is human mutuality, human connection, and the wish for that.”14 If the purpose of diabetes education is to equip people with the skills and knowledge necessary to manage diabetes, then storytelling helps personalize the process. This personal discovery can help people identify barriers to self-management as well as the resources they have and values they hold that will help them overcome the barriers. In Hawaii, there is a tradition of “talking story.” Described as conversation, it is personal connection as people share their stories with each other. One Hawaiian diabetes educator stated that unless the first few moments of a consult are spent talking story, little can be expected to happen in the encounter. Beyond this brief opportunity for connection, real storytelling and sharing can become time-consuming. Even though it is valuable, storytelling may be too costly. Perhaps we need to think about revamping the old “support” group into “story swaps.” Research is needed to help us understand the power and utility of stories so they can be used effectively and appropriately in diabetes education. — Cathy Feste is a storyteller, inspirational speaker, and author of The Physician Within and 365 Daily Meditations for People with Diabetes. She has worked in health promotion and disease prevention since 1974.
2. Feste C. A practical look at patient empowerment. Diabetes Care. 1992;15:m922-25. 3. Remen R. Foreword, 365 Daily Meditations for People With Diabetes. American Diabetes Association, 2004. 4. McKee R. Storytelling that moves people: A conversation with screenwriting coach Robert McKee. Harvard Business Review, June 2003. 5. Bruner J. Actual Minds, Possible Worlds. Harvard University Press, 1986. 6. Dahlquist D. Elmer the king: Stories more felt than known. Storytelling. 1994;6(3):13. 7. Feste C. Empowerment: Facilitating a Path to Responsible Self-Care. Bayer, 1991. 8. United Feature Syndicate, Inc. 9. Campbell J. The Hero With a Thousand Faces. Princeton University Press, 1973. 10. Feste C. The Physician Within. Humedico, Inc., 1993. 11. Aronson D. We ask the experts. Today’s Dietitian. 2005;7(3);18. 12. Harshman N. Learn Your Story, Find Your Power. Abbey Press, 1992. 13. DOC News. Practical insights on preventing and treating diabetes, obesity and cardiovascular disease. American Diabetes Association, March 2005. 14. Woodhill C. The man who listens to children. Storytelling. 1992;4(4):10. |
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