A person's personal story about health and disease determine their health behaviors.
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How do we make sense of this? 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, hid the brochures from us because they promised that she would be "sweating one hour per day". My mother grew up aspiring to be a lady and ladies didn't sweat; they glowed. She grew up in a world in which only laborers and the lower social classes (from which she originated) sweated. She aspired to become middle class in the context of Appalachian Kentucky. To sweat would be to rejoin the ranks of the poor. When she visited her cardiologist recently, she complained about fatigue and shortness of breath. "Of course," he said, "you're not doing cardiac rehab. You can't expect to recover without exercising your heart!" She still hasn't, regardless of how much I tease and try to get her to change her story.
My patient who ate only brown food did so because his hero, a British power lifter, ate only chicken fried steak at every meal. His sister went on a vegetarian, raw food diet when she was diagnosed with cancer and died anyway. Therefore, he had concluded, vegetables can't be good for you. My patient 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. He believed "real men" only ate steak, and, besides, vegetables killed his sister. When we took the time to actually inquire why he ate as he did, and he listened to what he had to say, he had the realization that his stories sounded a little crazy, even to him. His hero had, apparently, been killed by the mob, and hadn't had the opportunity to grow old and reap the rewards of his health behaviors. His sister, I suggested, would have probably died even if she'd only eaten steak when diagnosed.
My patient from 25 years ago needed a different story. I hadn't heard of Narrative Medicine at that time and didn't fully appreciate the power of story. Now I would take more time to elucidate the story behind his driven behavior, his lack of exercise, and his poor diet. I wouldn't have made my prediction without trying harder to change it.
the challenge of contemporary medical practice.
We often know when our patients are on a path to a tragic outcome. Changing that requires time, and it may not
be something we can delegate to a counselor who is not medically trained,
working in our offices. We may need to
do it ourselves. We may need to ask the
questions and reflect with the patient on the stories that guide his or her
behaviors. To do this, we need a
different method to pay for care. We
need to be able to bill for time spent in primary care. Physician counseling matters. An ounce of prevention is worth many pounds
of coronary care and end of life care and the loss of a life at an early
age. We need to envision a health care
system in which this kind of work is more possible. For this reason, I urge everyone to work
toward changing our health care system from profit driven and illness oriented
toward prevention driven and wellness oriented.
However, if we became wellness oriented overnight, it would be hard for
many of my colleagues to know what to do.
For this reason, we need to work toward understanding now 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 story change his complications of diabetes? I didn't know if it could. I don't know if he could reverse any aspects of his condition. I told him that and commiserated with him about how terrible it was that no one had offered him any other story about diabetes. Tragically, his mother had diabetes, too, and had died an early death for the same reasons. I told him I knew he could slow the rate of progression, and that I believed without proof, that he could improve to some degree, though I didn't know how much. 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 as I did. 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 had other stories about diabetes. They would take him so much more seriously that the doctors and nurses, because he was like them. He came from their ranks. He spoke their language. Plus, they could see his difficulty walking and feel for his loss of vision. Our patient seemed encouraged by this idea, and promised to consider it. Being helpful to others could do wonders for his feelings of helplessness and hopelessness.
A recent narrative medicine study looked at African-Americans with uncontrolled high blood pressure. For reasons that we don't understand, this population sometimes has the most difficulty controlling blood pressure. People watched video recordings of other people who looked and talked just like them, telling the story of how they got their blood pressure under control. Watching the videos was as helpful as taking blood pressure medications.
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 colleagues make fun of people's stories, calling them superstitious or primitive. We privilege our medical story without understanding that it is only one of many, all of whom 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. In the famous book, The Spirit Catches me and I fall down, Hmong people living in Modesto, California, believed that their children with epilepsy were behaving as they did because of spirit possession and that it was an honor to be so possessed. Of course, the neurologists believed otherwise. The first response was to call Child Protective Services, which didn't work so well, because the Hmong community banded together to hide and protect the individuals sought by the State. More effective was to collaborate with the traditional Hmong healers and to form a genuine, cross-cultural dialogue in which both stories could co-exist.
Today, where I practice in Maine, it is somewhat reversed from the Hmong community. For example, I have many patients who come with the "bipolar story". They've got the bipolar and its 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 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 5 to 10 Rock Star energy drinks. Her diet was mostly pasta and pizza with donuts and cakes. She didn't exercise. She could 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 we doctors, but not 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, characters in movies, comic books, TV shows, plays, novels, anywhere, who can inspire different behavior and support those stories.
This February, at Rowe Conference Center, Barbara Mainguy and I will be leading a workshop, in which we'll explore how to elicit the story of the illness and the story of what will make people well. We'll also explore how to work therapeutically with the patient's story at the same time as other treatments we may be providing. We'll see that playing with story can make us more effective and be more fun. For more information, see http://www.rowecenter.org.
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, 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 2 liters per day now). Her Rock Star is maxed at 5 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).