Writing Oneself Out of Fibromyalgia

Fibromyalgia (FMS) is a debilitating mix of pain, fatigue, sleep disturbance, and depression that is resistant to treatment. Part of the difficulty in treating the millions of Americans who fit the diagnosis is that FMS may not actually be an illness.

Rheumatologist Frederic Wolfe, M.D., was the lead author of the diagnostic protocol for FMS in 1990, but he now feels the diagnosis has done more harm than good and is further disabling patients. “Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Wolfe wrote in The Oregonian, January 14, 2008. “To make people ill, to give them an illness, was the wrong thing.” He now considers the condition a physical response to stress, depression, and economic and social anxiety, and cites the unhealthy alliance between physicians and the pharmaceutical companies, among other factors, as contributing to the problem.

So perhaps FMS was written into existence; meanwhile, my colleagues and I have found that patients can write themselves back toward health using narrative medicine, a process of writing and telling our life stories, as well as meditation and spiritual guidance.

In our pilot study, 22 FMS patients were recommended by a local rheumatologist and interviewed by phone. Eleven women and two men agreed to complete an extensive 38-item autobiographical questionnaire, as well as participate in eight weekly, 90-minute sessions that included meditation, writing, spiritual guidance, and an educational component, including discussion and homework. In the end, only eight patients completed the program and a six-month follow-up. Five patients completed 12- and 18-month follow-ups as well. The majority of patients thought the program was too much work.

Nevertheless, the patients who conscientiously adhered to the meditation and writing protocol reported significant relief; others reported varying degrees of improvement. Participants said they appreciated the opportunity to write their life stories and to have someone interested in the complexities of their lives. Not surprisingly, anger and forgiveness of self and others, as well as resistance to individuation, were core issues.

Meditation and writing have both been used, separately, for healing. Using meditation and writing together requires more time, patience, and insight on the part of patient, medical doctor, researcher, and therapist. But the extra time does seem to pay off.