Stories That
Heal
David Spero RN
Lots of people struggle with diabetes self-care, but Mike didn’t even try. In spite of his diabetes educators’ best efforts, he wouldn’t or couldn’t pay any attention to food, glucose monitoring, exercise or anything else related to his health – never, not even for one minute. What was the problem?
It turned out that Mike had a story he had never told. His beloved father had gone from foot infection to diabetic eye disease (retinopathy) to kidney damage and death within a single year. Mike had never talked about it. He rarely allowed himself to think about it, but the grief and terror he felt weighed him down, making his world seem empty and hopeless, making it impossible to take control of his life. When he finally told his story and dealt with his painful emotions, his depression lifted and he was able to start taking better care of himself.
Healers, from ancient shamans to modern psychoanalysts, have found story telling among the most powerful forms of healing. We all have life stories, but we usually keep them to ourselves, if we are consciously aware of them at all. Some help us keep going, while others cripple us. By telling them or writing them down, we can deal with the pain they cause, amplify the strength they give, and even change them for the better.
People can tell their stories in therapy, in groups, in interviews, or on their own. Psychiatrist Fred Busch says, “People come to therapy because they are living out somebody else’s story, or afraid to see the story they’re living out, or they cannot bear the story they’ve constructed. The goal is to help the patient discover the stories they’ve been living, and in this way find the stories they choose to live.”
Anyone with chronic illness has a story that includes pain, loss, fear, and frustration, just as we all have joys, strengths, and happiness. Putting our experiences and feelings in the form of a story can help us deal with them in three important ways. Stories help us make sense of our lives, help us process trauma and loss, and allow us to communicate our experience with others, especially future generations.
“Telling your story helps you understand where you have been and where you are going,” says Teresa Campbell, whose book Life is an Adventure, chronicles 25 years of travels with multiple sclerosis. “It helps you grieve your losses, celebrate your successes, acknowledge your fears, and move on.” This article explains the different uses of storytelling and gives tips, instructions and resources for telling your own.
Healing trauma
The first way stories help is by helping people process pain, grief and trauma. If losses and traumas go un-grieved and untold, they wind up as depression, sapping your motivation and energy. Louise DeSalvo, PhD, author of Writing as a Way of Healing, says, “Depression is a story that has not yet been told.”
Psychologist John Pennebaker at Southern Methodist University has studied the healing effects of story telling for over 20 years. He found that writing about painful experiences for just 15 minutes a day for four days gave some students better health and better mood. They visited the doctor less often and reported less trouble getting used to college life. These beneficial effects were still in evidence six months later.
The students who benefited were those who wrote about troubling memories and also about their feelings. Students who only described events or only vented feelings didn’t benefit. It was writing a combination of descriptions of events and of related feelings that produced healing.
It didn’t seem to matter whether subjects wrote in a journal or talked into a tape recorder. It didn’t matter if anyone else heard it or read it. The important thing was to tell their stories for themselves. Participants said things like, “Although I have not talked with anyone about what I wrote, I was finally able to deal with it, work through the pain instead of trying to block it out. Now it doesn’t hurt to think about it.”
Other experiments showed that writing or talking about painful memories and emotions improved immune system function. People’s T-cells were more active; they responded better to vaccinations. Pennebaker believes these studies show that “inhibition” – holding back painful or shameful thoughts – takes energy. Inhibition becomes a powerful source of stress that slows the immune system and causes depression. When these inhibitions are released by talking or writing about traumatic events and their related emotions, the body starts to work much better.
Researchers actually looked at the brain waves of people who were telling their stories in this way. They found that writing or telling a coherent story used one side of the brain, while dealing with emotions used the other. So both sides of the brain were involved. Pennebaker believes that is an important reason why the storytelling method heals.
People who have been in accidents or assaults or other traumatic events often talk about them over and over. Pennebaker says this seems to be the body’s natural way of dealing with trauma. The problem comes when we are not allowed to talk about what happened (as often happens to sexually abused children, for example.) If shame or fear keeps people from talking about their traumas, they often develop all kinds of physical and mental health problems.
Why is this relevant to health and illness? Like everyone else, most people with chronic illness have painful memories. But an illness like diabetes itself can be a source of fear, frustration, and grief.
Cathy Feste, a diabetes educator and diabetic herself for over 40 years, writes about a young man who told her, “Anyone who has diabetes and doesn’t admit that he’s inferior is a liar!” She asked him how his condition had been introduced to him. He said, “I was 10 years old when I was diagnosed. My mother and doctor sat me down and told me I was sick. They said I couldn’t go out for sports anymore or play with my friends the way I used to.”
You may have had such an insensitive diagnosis, or like Mike, you may have seen relatives suffer severe complications. Everyone has occasional trouble keeping to their self-care plans, and most people worry about complications or about their latest blood test results. These things hurt. In his book, Diabetes Burnout, psychologist William Polonsky says living with illness can make you feel angry, sad, frightened, anxious, guilty, frustrated, hopeless, lonely, ashamed or defeated. And that’s on top of all the other traumas and losses that life can bring you!
So talking
or writing about your experiences can help you deal with them better. But
what’s the best way to do that, and what might stop you? In her book, Louise De Salvo gives
several suggestions.
-- Write or talk into a tape recorder twenty minutes a day over a period of four days. Take days off in between writing periods. This way you won’t feel overwhelmed.
-- Do it in a comfortable, safe, private place.
-- Write or talk about issues you’re currently living with, or things you’re thinking or dreaming about a lot, or a trauma you’ve never disclosed or resolved.
-- Write about joys and pleasures too
-- Include whatever positives you can find in the experience. What did you learn? Who helped you? What have you overcome?
-- Write or talk about what happened and about your feelings too. Link events and feelings.
--Writing will have benefits even if nobody reads it. Keep your writing or tapes safe if you don’t want others to read or hear about it.
-- Expect complex and difficult feelings at the beginning. People often report feeling troubled at first, but soon start to feel more comfortable and less stressed.
-- Because feelings may be difficult at first, it’s a good idea to have someone available – a professional, a support group or trusted friend or family member you can talk with if feelings get too strong.
-- Story telling is not therapy, but it can be just as powerful and complementary to therapy. You can do them together if you want.
It might be
helpful to write or talk about how your illness fits into your life. In
thinking about your condition’s role in your life, you might want to consider
questions such as: how does your
illness affect your personal relationships? How has it changed your life?
Your outlook on life? What was your experience of being diagnosed? What gives
you hope and inspiration during "down" times?
You might also want to consider more philosophical questions. Where did your illness come from? Is there something your condition is trying to do for you? To teach you? Or protect you from? Has your illness given you any gifts? If your illness magically disappeared, how would you live differently?
Dr. Pennebaker says, “It is not necessary to write about the most traumatic experience of your life. It is more important to focus on the issues that you are currently living with. If there is something you would like to tell others but can’t, for fear of embarrassment, writing about it can help resolve it in your mind.”
Without a story line, our lives tend to seem like a jumble of unconnected events. Things happen; we make choices, and we don’t know why. Story telling helps us make sense of our lives, which reduces stress and gives us a sense of control. And feelings of control are valuable in dealing with an unpredictable condition.
Many of us are living other people’s stories about who we are. A man with Type 2 diabetes told Cathy Feste that he “couldn’t exercise,” even though his doctors had cleared him to participate. He meant that 35 years before, at age 17, a phys ed teacher had called him a “klutz” and told him to get out of a game the class was playing. He had carried that story around ever since and had never rejoined the game.
But we can reclaim our stories and change them. A doctor in England told psychologist Lawrence LeShan that “her whole life had been a failure.” She never wanted to be a doctor. She didn’t really like patients and rarely read medical journals. She had moved to a small town to have a quieter practice, so she could devote more time to gardening, which she loved. She thought of herself as a bad doctor and a frustrated gardener.
In therapy, though, she found a completely opposite way of seeing her story. Her parents had insisted she serve people with her intellect and had pushed her into medicine. By adopting a low-key medical practice, she was able to create the physical beauty of her lovely garden cottage. She now saw herself as having created a beautiful combination of her parent’s values and wishes and her own. She was a success.
An African-American in Louisiana owned a small grocery store. He was extremely intelligent and had wanted build a larger business, but childhood poverty and ongoing racism limited what he could do. Instead of feeling frustrated, he told his children, “I got as far as I could from where I started. Now you go and pursue your own dreams.”
Oral historian Nadine Wilmot collects people’s stories in her job at University of California at Berkeley. She says the first task is helping people see that their stories are important. “People will say things like, ‘I’m not important,’ or ‘why do you want to talk to me?’” she says. “I have to let them know they are important, that their life is historically relevant, and they become quite excited about it once they begin talking.”
Wilmot helps people remember by involving their senses. “We all have a canned story,” she says. “You know, ‘I was raised here, and it was this kind of town…’ I focus on the sensory aspects, like what things smelled, tasted, felt like, because the end result is richer if someone’s engaged with their story in that way.”
In my book, The Art of Getting Well, I suggest other ways to develop your story: “Think about where you came from, the times you’ve lived in, how they have influenced you, and you them. Remember the highs and lows, what you learned, whom you helped and who helped you.”
Other questions you can think about are: What is the best thing that’s ever happened to you? The worst? What’s the best thing you have done so far? The worst? What are you proudest of? What has been the best period of your life? The worst? How did you get through that time?
Like archeologists, we sometimes need artifacts to help us build a story. In Kay Nelson’s book Writing Your Life Story: A Legacy to Your Family, she provides lists of “memory joggers” to help us remember. She suggests looking through photo albums and old catalogs or magazines, listening to music or watching movies from different periods of your life, or going to historical museums. Nelson says remembering gets easier the more you work at it and the more cues you have.
Cathy Feste says, “Stories clothe ideas in humanity.” Telling children and grandchildren about your life lets you transmit your wisdom in a way they will understand and embrace. Because they grow up in a world very different from yours, they will enjoy hearing the details of a life they cannot even imagine. You probably won’t be sharing painful traumas, but your life certainly includes many valuable lessons and memories for your descendents.
Providing a record of your story is a great gift to a family. The first person Nadine Wilmot ever interviewed was her grandmother, who has since died. “At the funeral,” she says, “I felt so fortunate to be able to bring my uncle, father and brother many CDs of her voice. That was a wonderful gift. She had a lovely voice.”
Stories also help us communicate with doctors, other health professionals, and friends. Rather than tell them, “I’m doing pretty good with my meal plan, but I’m having trouble exercising,” or something vague like that, tell them a specific story about one event – maybe the day you planned to walk in the mall but wound up baby-sitting your niece’s children instead. Hearing a story, including feelings, will give them a much better picture of what you’re going through. It might also lead to your receiving some needed help.
Telling stories, especially painful ones, can be scary. You might not want to face memories that you have spent years repressing. But talking or writing about them and letting them go is better than carrying them around.
You may be embarrassed or ashamed and not want anyone else to know your story. That’s okay; you don’t have to share what’s uncomfortable. Telling the story to yourself, thinking about it and feeling it can be healing even if no one else ever hears. (But sharing with others can be powerful healing, too.)
On the other hand, we might feel that we don’t have anything worth saying. We think our lives are so ordinary that they aren’t worth the effort of saving. But every story has value. “Your mind is a storehouse,” says Kay Nelson. “Its contents are precious. Your thoughts and memories seem ordinary to you because you’ve lived with them so long. But your story will be read by your descendents to whom life without the microchip will seem inconceivable!”
Others might believe they don’t write well enough to tell their stories, even to themselves. But Louise DeSalvo says that anyone with a 6th grade education is smart enough to get the emotional benefits of writing their story down. And if you can’t, you can tape record it.
Some people may fear that creating a biography means they are getting ready to die. “Fear of mortality can come up when you start to look at and document your life story,” says William Hazelwood, founder of Sojourna, a company that helps people tell their stories. “But we are going to die someday anyway. Why not take steps toward accepting, savoring and celebrating life now? There is an old saying that funerals are for the living. So are personal legacies.”
What’s the best way to tell your story? And what do you do after you tell it? The answers depend on you. If you’re telling about painful or traumatic events that you don’t want anyone else to know, you can keep a journal or talk into a tape recorder. You can always share them later if you want.
A more interactive way to tell stories is by being interviewed. Perhaps a child or grandchild would like to talk with you on tape, or even videotape you talking about your life. The advantage is that they will ask you about what is important to them, and you can also tell them what is important to you. You might also call the local college history department and see if anyone is doing oral histories.
Stories are more than words. You might want to illustrate your writing with photographs or, better yet, drawings. Sometimes art brings up feelings that words don’t. But always write about the feelings too. That way you get both sides of your brain involved. If you’re creating a life history for your descendents to read, Nelson’s book has a lot of tips on creating a valuable and entertaining biography
There are new
ways to tell stories, too. Although we don’t have research to document their
health benefits yet, some people are using software like Microsoft Power Point
and Apple’s I Photo to mix words and pictures. William Hazelwood of Sojourna
says, “Unlike text-only formats, these
programs allow easy revisions, visual attachments, and audio supplements.”
Storytelling can be done in groups
very effectively. Outfits like Sojourna often hold events where people can
share and learn from others how to picture and tell their story. Local
community colleges may have story telling classes you can join. Support groups
can be great venues for story telling. Remember that just venting emotions or
complaining doesn’t help. You have to talk about both emotions and the events
that caused them.
Although some biographies wind up getting published, don’t feel you have to send your story to a magazine or book publisher. Some magazines want personal stories, while others do not. You can easily show yours to the people who want to see it. If your story does wind up published, so much the better!
Dr. John Pennebaker and Louise De Salvo give short lists of things not to do with stories.
-- Don’t use talking or writing as a substitute for action. If you can do something about a problem, do it.
-- Don’t get into intense emotional stuff without having some help available, from professionals, friends, or support groups
-- Don’t use writing as a way of complaining. Use it to discover how you feel and why. Just venting or complaining can sometimes make you feel worse.
-- Don’t become over-intellectual or over-analyze everything. Concentrate on events and feelings
Although
telling your stories might take some getting used to, especially if you have
always been a quiet type, you may soon find that it enriches your life and even
your conversation. You might find people becoming more interested in you and
listening to you better when you talk in stories. You may grow in understanding
and in your ability to deal with your life and your illness. Stories are
powerful medicine.
David Spero RN is author of The Art of Getting Well:
Maximizing Health When You Have a Chronic Illness (Hunter House 2002) and
the upcoming Politics of Diabetes (New Society Publishers 2006). He
gives classes, lectures and workshops around the country. Contact him at Nurse@davidsperoRN.com