by Sandi Stromberg

Human beings are born storytellers.

In prehistoric times, they carved images on walls. Later, they worked as scribes, selling their services in open-air markets, or told legends around the evening fire. In the Middle Ages, they traveled the countryside as bards, regaling eager listeners with their picaresque tales. And before television, they sat in family groups at kitchen tables, or rocked on front porches, spinning yarns.

In the 21st century we no longer have time. Instead, we live noisy lives in an information glut that has distanced us from story. And perhaps nothing is more distancing than a diagnosis of cancer.

“In the process of becoming patients, people often lose their stories,” says Rev. Steven Spidell, denominational chaplain at M.D. Anderson and facilitator of “Healing Stories,” a class at Place …of wellness. “With the chaos and disruption, they begin to tell the doctor’s version of their story, the medical version, not their own. They get tunnel vision and forget who they were before. But people are fundamentally narrative-based. They need to find meaning, make sense out of their disease.”

Without doubt, being diagnosed with cancer causes chaos, disruption and stress — the effects of which may include hormonal and immune changes, the narrowing of attention, falling into poor eating patterns, not getting enough exercise, sleeping poorly, suffering from post-traumatic stress disorder and losing the overall quality of life.

Studies now being conducted show that when people have a chance to tell their deepest story, it can help relieve the sustained stress that has a profound effect on their psychological and physiological well-being. In fact, if scientists produced a drug that is turning up as many positive results as expressive writing is these days, pharmaceutical companies would be rushing the Food and Drug Administration to get it on the market.

But how can the healing power of story be measured quantitatively? How can it be bottled and sold? And why does having the opportunity to tell the story of personal trauma have such a powerful affect on both psychological and physiological health?

Researchers are only beginning to hypothesize some of the answers. They know that writing helps organize complex emotional experiences into a narrative, a story, and often writing brings about an “ah-ha” experience, a sense of, “So that was what was going on.”

One thing is certain. The evidence is now so compelling that top government agencies are investing money through important grants to help researchers investigate why emotional expressive writing is beneficial to overall health.

One such grant has been awarded to Dr. Lorenzo Cohen, assistant professor in the Department of Behavioral Science at M.D. Anderson. Over the next five years, he will be the principal investigator in a study being funded by the Basic Biobehavioral Research Branch of the National Cancer Institute.

His project, “Biobehavioral Effects of Emotional Expression in Cancer,” will assess the psychological and physiological benefits of an emotional expression intervention in patients with renal cancer.

The study focuses on patients with renal cancer, Dr. Cohen says, “Because the impact of stress on the immune system may be especially detrimental for patients being treated for renal cell carcinoma (cancer of the kidney), as renal cell carcinoma is an immunogenic disease — directly regulated by the immune system.”

According to Dr. Cohen, emotional expression writing has been shown to help patients adapt to traumatic events, while reducing stress, and improving psychological adjustment and quality of life, and positively impacting immune function. He, therefore, hopes to prove that it will be beneficial to those suffering from cancer of the kidney.

Dr. Cohen has already conducted a pilot study that examined the effects of expressive writing on psychological and behavioral adjustments in patients enrolled in a Phase II trial of vaccine therapy for metastatic renal cell carcinoma. Forty-two patients participated in this study and were randomly assigned to either an expressive writing or neutral writing group.

Preliminary analysis of the data suggested that the patients in the expressive writing group experienced increased vigor, less overall sleep disturbance, better sleep quality, longer sleep duration, and less daytime dysfunction compared with patients in the neutral group. Several significant changes in the use of words and verb tense suggested that the emotional disclosure engendered cognitive processing across the writing sessions.

One of Dr. Cohen’s mentors has been James W. Pennebaker, Ph.D., professor of psychology at the University of Texas at Austin. In the mid-1970s, he and fellow researchers began to look at the nature of self-disclosure and physical health. In his book, Opening Up: The Healing Power of Expressing Emotions, Pennebaker writes, “Over time, the work of inhibition [keeping thoughts and feelings hidden] gradually undermines the body’s defenses. Like other stressors, inhibition can affect immune function, the action of the heart and vascular systems, and even the biochemical workings of the brain and nervous systems. In short, excessive holding back of thoughts, feelings, and behaviors can place people at risk for both major and minor diseases.”

Opportunities for getting in touch with story are available through Place … of wellness at M.D. Anderson. Laura Baynham-Fletcher, the manager, stresses that this center allows for different modes of story telling. “Different people,” she says, “are comfortable telling their story in different ways. Participants may also be at different stages of telling their story. We try to offer many modalities and if we don’t have what people need, they usually tell us and we provide it.” Some of the programs include discussion groups like “A Talk with Dr. Baile” (professor and section chief of psychiatry in the Department of Neuro-Oncology), journaling, art, movement, guided imagery/meditation, scrapbooking and support groups.

As David Spiegel, M.D., Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, wrote in his editorial in the April 1999 issue of the Journal of the American Medical Association, “Manufacturers of paper and pencils are not likely to push journaling as a treatment addition…. [However] Ventilation of negative emotion, even just to an unknown reader, seems to have helped … patients acknowledge, bear, and put into perspective their distress…. In the growing number of studies, it is not simply mind over matter, but it is clear that mind matters.”