Storytelling may help cure what ails her — just as her story has helped others
Teresa Purifoy doesn’t care who knows her troubles. She wears many of them on her 425-pound body anyway, so why would she mind?
Plus, she loves that someone is listening, and that her struggles might help someone else.
“Even though I have flaws on my body I still can tell my story,’’ the 48-year-old Birmingham, Ala., resident said with evident pride.
Purifoy was a volunteer in a recent study led by University of Massachusetts Medical School researcher Dr. Thomas Houston. It found that patients could better control their blood pressure if they heard stories from people like Purifoy who were successfully controlling theirs. Purifoy is also hoping that what she heard from other volunteer storytellers will help her finally beat her weight problem.
People going through a medical crisis have always shared stories or sought the advice of others in similar situations. But now storytelling may be becoming a formal part of the health care system.
It’s easier to understand medical advice delivered by a fellow patient, Houston and others have found. It’s often more believable, too. Talking about their own medical problems can also help patients cope. And all medical care could be made better, another line of reasoning goes, if doctors would listen better to the stories their patients want to tell.
Purifoy, for instance, has a lot to say.
If it were just a matter of willpower, she’d already be wearing those size 20 clothes she dreams about. After all, she was able to quit her smoking habit cold turkey one day in 1997, raise three children, and care for her disabled husband.
With diabetes and fibromyalgia in addition to her high blood pressure, Purifoy needs help to lose the extra weight. But she’s not convinced her caregivers are on her side. One doctor told her she was fat and ugly. Another refused to cut an in-grown toenail, saying the real problem was too-tight shoes. (It wasn’t.)
Purifoy would rather take advice from someone who looks like her. If they’re too skinny, she said, the advice doesn’t seem relevant.
“All I see is the little person. I can’t get the message,’’ she said.
She recently received a copy of the DVD from Houston’s study that features her story, and she’s been inspired by some of the other tales on it. Watching an overweight man named Eddie talk about his workout plan made her think that she might be able to do some exercises, too, she said, and inspired her to try a few.
And that’s the point, said Houston, also a doctor at the Bedford Veterans Affairs Medical Center.
“Storytelling is a natural human thing. We live by stories and through stories we make meaning of our lives,’’ he said.
Houston’s study, published earlier this year in the Annals of Internal Medicine, looked at 299 African-Americans with uncontrolled blood pressure. Those who listened to stories from others in similar straits lowered their pressure more over the next six months than those given factual data only, the study found.
Storytelling is particularly effective, he and others said, for patients who have trouble trusting or understanding information told to them by medical professionals. Stories from “real’’ people just have more credibility than statistics, he said.
“When provided with facts, people often counter-argue or identify ways that the information is not directly related to them,’’ he said. “With storytelling, you get engaged in the story, you hear the information and the counter-arguing mechanisms of your brain are turned off.’’
Matthew W. Kreuter, director of the health communication research laboratory at Washington University in St. Louis, says that the two methods can complement each other.
He would like to see a “story rack’’ alongside the pamphlet rack found in nearly every doctor’s waiting room, allowing people to choose stories from patients with similar problems and demographics.
The Internet has opened up a world of stories for people — though some of them should be taken with a grain of salt, Kreuter said. The storyteller might have a very unusual tale that’s not relevant to you or that offers bad advice. Or a narrative might have been posted by a drug company posing as a patient to promote a drug.
On the plus side, the Internet also offers people an outlet for communicating their own story to others.
Simply telling or writing a personal story can be cathartic, whether there’s an audience for it or not, according to James W. Pennebaker, chairman of the Psychology Department at the University of Texas at Austin.
There have been more than 200 studies over the past 20 years confirming the benefits of putting one’s medical story into words.
“Almost anyone, if they find themselves thinking or worrying too much, and especially if they don’t have someone to talk to — writing is beneficial for them,’’ Pennebaker said.
Internist Rita Charon thinks that good patient care simply can’t happen without letting patients tell their stories.
“The only way to know what’s the matter if you’re sick is to tell someone else about it. It’s in giving the account of self that the sick person comes to know what’s the matter,’’ said Charon, director of the Program in Narrative Medicine at Columbia University. “When we deny them that, not only do I the doctor not find out what’s the matter but she the patient doesn’t [either].’’
When Charon meets her patients for the first time, she quizzes them not about their symptoms but about their story. “Please tell me what you think I should know about your situation,’’ she’ll ask.
Within five minutes of posing the question — fast enough to fit into even a harried doctor’s schedule — one recent patient told Charon everything she needed to know to understand the woman’s health.
“I got a sense of what’s wrong with her, what’s right with her, what her pleasures are,’’ Charon said. “There’s nothing more urgent for a doctor to know than what matters to you.’’
What matters to Purifoy is ending the pain from her fibromyalgia, a bad back, and diabetic neuropathy. To do that, she has to lose weight. Alabama’s Medicaid program will pay for weight loss surgery, but none of the local surgeons is accepting Medicaid patients, she said. So she’s got to do it the long, slow way — by eating less and exercising more.
“For a person like me who’s struggling, you need somebody to go through it with you who understands,’’ Purifoy said. “If they don’t understand, all they say is why can’t she do this?
“These DVDs really are helpful. You’ve got somebody who’s living your story, they’re trying.’’
Karen Weintraub can be reached at firstname.lastname@example.org.