by Annie Brewster, MD and Jonathan Adler, PhD
On a Wednesday night in early June, Liz, a 50-year-old woman with stage 4 ovarian cancer, sat on the fireplace hearth in a cozy living room with 20 of her close friends gathered around her. Some sat on chairs, some pressed closely together on the couch, and some sat, knees folded beneath them, on the soft, white carpet. These were the guests she had invited to her Healing Story Session, a therapeutic storytelling event run by Health Story Collaborative, Inc. Her guests were there to witness her story of illness and healing. They listened intently, the room at times silent except for Liz’s voice, and at other times full of laughter, sniffles and nose blowing.
At one point, Liz, an oncology social worker herself, shared her experience of waking up from surgery as a patient in the hospital where she worked. She recalled coming to consciousness in the recovery unit, still groggy from the anesthesia, alone and terrified. She didn’t fully understand what was going on. Why was she getting a blood transfusion? She could hear the nurses talking loudly around her, laughing and discussing a jewelry show they had just attended, describing a turquoise bracelet they had purchased. Why was no one paying attention to her? In her anesthesia-altered state, she worried that they didn’t like her.
Liz has been on the other side too, and she shared this honestly with her guests. She remembered standing outside a patient’s door—on more than one occasion– talking with other social workers and nurses about where they should go for lunch, joking and bantering. They cared about the patient, of course, but they shed the caregiver role once over the doorway threshold, forgetting that the patient might still be listening.
Being a patient and feeling so alone was a new experience for Liz, as was sharing her story in front of a supportive audience during her Healing Story Session. In fact, these two experiences stand in stark contrast—-feeling frightened and ignored on the one hand, and feeling heard, empowered, and supported on the other.
Health Story Collaborative, Inc., founded in September 2013, is a nonprofit organization focused on collecting, honoring, and sharing stories of illness and healing. Our primary goal is to harness the healing power of stories. Healing Story Sessions involve working with patients to construct their illness narrative, and then providing an opportunity for them to share this story in front of an invited group of supportive community members. This act of sharing simultaneously de-stigmatizes the illness experience, empowers patients, and fosters intimacy within their community.
Why stories? Stories are what make us human. Stories connect us. Stories allow us to make meaning in our lives. As a practicing internist and a clinical psychologist, both of whom have also been on the patient side of the patient-provider equation (Annie with Multiple Sclerosis and Jonathan with Asthma), we have personally experienced the power of stories. As providers, we take better care of our patients when we understand the context of their lives. As patients, we benefit from feeling truly listened to. As humans, we learn and feel less alone when we listen to one another.
Research supports these intuitions. There is a large body of scientific work supporting the theory of narrative identity, which suggests that our sense of self is best described as the integrative, internalized, evolving story we weave about our lives. While the historical facts of our lives certainly matter, the meaning we make about our experiences, captured in the stories we tell about them, is also strongly connected to our mental health. But not all stories are created equal; some of them do a better job of supporting our psychological well-being. Our work with participants in the Healing Story Sessions strives to capitalize on those aspects of personal narrative that social science has shown to be most strongly associated with mental health.
We know that stories heal. However, our current-day medical system, focused on maximizing efficiency and scientific mastery over relationships, often overlooks the stories of peoples’ lives. We believe this is a tragedy. Medicine is in crisis, with hordes of dissatisfied doctors and unhappy patients. Medical care is suffering.
Health Story Collaborative, Inc., and more specifically the Healing Story Sessions program, is our attempt to revive storytelling in medicine. While we need to continue to push for health care reform that will allow for more compensated quality patient-provider interaction, we also need to think outside of the box to develop new therapeutic modalities that draw upon the age-old power of stories. Instead of feeling frightened and ignored, we want patients to feel heard, empowered, and supported.
Watch Dr. Annie Brewster, Health Story Collaborative Founder and Executive Director, speak at TEDx Fenway about how Health Story Collaborative came to be:
Annie Brewster, MD is the Founder and Executive Director of Health Story Collaborative, Inc, Co-Director of the Healing Story Sessions program, and a practicing Internist at Massachusetts General Hospital in Boston. She is also a patient, diagnosed with MS in 2001. Her work is dedicated to keeping the patient voice alive in healthcare and to harnessing the healing power of stories.
Jonathan Adler, PhD is the Chief Scientific Officer of Health Story Collaborative, Co-Director of the Healing Story Sessions program, and an Assistant Professor of Psychology at Olin College of Engineering in Needham, Massachusetts. His research focuses on the relationships between identity development in adulthood and mental health.