Health and Illness Lie Within Our Stories
by Lewis Mehl-Madrona, M.D.
As a physician I had a patient who ate only brown food. He did so because his hero, a British power-lifter, ate only chicken-fried steak at every meal. My patient’s sister went on a vegetarian, raw food diet when she was diagnosed with cancer and she died anyway; therefore, he had concluded, vegetables can’t be good for you. He had been to the Mayo Clinic, the Cleveland Clinic, and Harvard, and had been told to change his diet. No one thought to ask him why he ate as he did. His story was that “real men” only eat steak, and, besides, vegetables killed his sister.
Whatever health behaviors we have, we have for a reason. We have a story behind why we do what we do. My mother, who is supposed to be in cardiac rehabilitation following an aortic valve replacement at age 83, has hidden the brochures from us because they promised that she would be “sweating one hour per day.” My mother’s story is that she grew up aspiring to be a lady, and ladies don’t sweat; they glow. She grew up in a world in which only laborers and the lower social classes (from which she originated) sweat. She aspired to become middle-class in the context of Appalachian Kentucky. To sweat would be to rejoin the ranks of the poor.
We need to work toward understanding that health and illness lie within our stories.
This past week I saw a 28-year-old man who was already experiencing the complications of diabetes. His parents’ story about his diabetes was that he could do and eat whatever he wanted. If he ate too much ice cream, they would just give him more insulin. By age 13, he weighed 220 kilograms. By age 28, he had numbness and pain in his legs, problems with his vision, and difficulty walking. He experienced occasional feelings of hopelessness and helplessness. He was angry that no one had told him what would happen if he hadn’t cared for his diabetes better. Here was a moment of pause. How could changing his story change his complications of diabetes?
As he talked about how helpless and hopeless he felt, and about how much he thought he should just lie down and die, both my medical student and I had the same idea. “Why don’t you go around to schools and tell kids how they should take care of their diabetes and why?” I said. The medical student quickly elaborated on that idea, having thought of it in the same moment. We proposed that, regardless of what he could do for the pain in his own legs and his own loss of vision, he could contribute to the world by making sure that other kids heard a different story about diabetes, one that showed the dangers of inaction. This could do wonders for his feelings of helplessness and hopelessness.
We must respect the stories people tell us about how they became sick. These stories have been called the illness narrative. I have seen my medical colleagues make fun of people’s stories, calling them superstitious or primitive. We privilege our own medical story without understanding that it is only one of many, all of which may be true. An Australian aboriginal elder told us that there are over 400 creation stories in Australia, and all are different, and all are true. After an appropriate pause, he told me that this was so because each story is true in the place where it is told for the people who tell it. Similarly, each illness narrative is true for the place it is told and for the people who tell it.
Today, where I practice in Maine, I have many patients who come with the “bipolar story.” They’ve “got the bipolar” and it’s genetic and their parents had the bipolar and it explains all their erratic and irritable behavior and if we could only find the right medicine, life would be wonderful. However, in our own story, which has moved further down the road from the conventional biomedical story, they’re living a lifestyle that generates mood instability and irritability. One woman who came for medication for her irritability was drinking four liters of caffeine-rich Mountain Dew daily along with five-to-10 Rock Star energy drinks. Her diet was mostly pasta and pizza with donuts and cakes. She didn’t exercise. She couldn’t change any of this because of her bipolar, which prevented her from eating differently or exercising. Here’s a case in which the biomedical story of genetic helplessness has been so totally incorporated as to seem almost ridiculous to those of us who are doctors — but it’s not ridiculous to the patients.
People have their own stories about what they believe will make them well, and these stories have been called the healing narrative. If you’re in a wellness profession, you have your own treatment narratives for the diagnoses you make, whether it’s traditional Chinese medicine, osteopathic assessments, or the standard labels for mental illness. Our job is to find an illness narrative into which we can collaborate to move the person forward toward health. The “find the right pill to make me well while I drink 10 Red Bulls” might not be the story that’s going to accomplish that. We need to search our memories for other people, or for characters in movies, comic books, TV shows, plays, novels — anything, anywhere — who can inspire different behavior and support those stories.
For my Mountain Dew/Rock Star client, I worked within her story, by continuing to look for the pill to prescribe that would satisfy her. However, at the same time, I told her traditional cultural stories from our area of Maine that promoted the idea of self-agency, of self-empowerment, stories advocating that we can take action, and that these actions can affect our environment, and they can make us feel better. Slowly but surely, she’s starting to reduce her Mountain Dew (down to two liters per day now). Her Rock Star energy drink is maxed at five per day now. She’s walking her dog more instead of paying her children to do it. We’re making progress, though not with the pills. She’s yet to find one that really appeals, and that’s probably because what she wants doesn’t exist — but that’s my story.
This piece is adapted from an essay originally entitled “The Difficulty of Practicing narrative Medicine” by Lewis Mehl-Madrona.
Lewis Mehl-Madrona and Barbara Mainguy recently have published a book, Remapping Your Mind: The Neuroscience of Transformation through Story, which provides many of the exercises participants will use in the Rowe workshop. Lewis came to the idea of story through his immersion in Native American culture and spirituality, whereas Barbara found her way through film and her studies at the University of Toronto. Together they have been exploring the role of story in healing, and they work to bring indigenous ideas such as story and the power of community into contemporary healthcare. They also have taught narrative hypnosis and hypnotic storytelling. Lewis is a physician, and Barbara is a psychotherapist. They live and work in and around Bangor, Maine.
