For those confronting illness, sharing stories offers solace and meaning

“People tell stories not just to work out their own changing identities, but also to guide others who will follow them.” – Arthur W. Frank

Due to the complexity of medicine and the rate at which the medical field grows and adapts with new technologies, doctors often approach illness as a puzzle they can solve. Doctors are encouraged, directly and indirectly, to distance themselves emotionally from their patients, so as to be able to do their jobs more efficiently and accurately. In this context, it can be difficult for doctors to stop and get to know their patients, to hear about what truly matters to them when they are sick. This is a detriment to healing.

In today’s healthcare, with 15 to 20 minute medical appointments, it is easy for patients to feel rushed and ignored, left wondering if their concerns were truly heard and taken seriously. How often do doctors inquire about their patients’ fears, concerns, sources of hopes, and goals? Not often enough.

Annie Brewster, M.D., was diagnosed with Multiple Sclerosis in 2001, as she was completing her medical residency in Boston, Mass. She has spent the past 14 years working as a doctor and living as a patient, and seeing the medical system from both sides has influenced her work as a doctor, and inspired her to start a nonprofit dedicated to helping patients advocate for themselves and find peace and support through recounting their health journeys.

Brewster started Health Story Collaborative to give patients a voice and to bring the human side of illness back into the routine of medical care and recovery. Everyone’s experience of illness is unique, but these experiences also hold valuable information that can potentially help another person going through a similar struggle.

The premise of the collaborative is that sharing stories is therapeutic for both story sharers and listeners. Research supports this claim. Receiving a medical diagnosis can be life altering. It requires individuals to find a “new normal”. This process can be isolating and frightening, but the meaning we make out of our experience with illness is important. According to Brewster, “Illness doesn’t necessarily make us ‘less.’ Quite the opposite. It can give us perspective, depth, compassion, empathy, wisdom, resiliency and strength.”

Health Story Collaborative’s chief scientific officer, Jonathan Adler, is a clinical psychologist and a professor at Olin College of Engineering in Needham, Mass. Adler’s research focuses on the way people make sense of challenging experiences in their lives and the way that meaning-making shapes peoples’ sense of self and psychological well-being. It is clear that the way we tell stories of illness has a significant impact on our mental health. Brewster and Adler work with patients to construct their narratives, paying close attention to the research. This does not mean glossing over the hard parts of illness, as acceptance is a critical part of healing, but it means guiding patients to focus on the themes of agency, communion and redemption, all of which have been proven to promote positive mental health.

As Brewster sees it, her story exemplifies many of these themes. Over time, she has been able to accept her diagnosis and to recognize the surprising positives that can come from living with illness. While having Multiple Sclerosis has certainly been a challenge, it has also given her perspective and strength she might not otherwise have. It has helped her to become a better doctor by fueling her desire to listen intently to those she cares for, and it has inspired her work to keep the voice of patients alive in health care through story-sharing. “We can only control the physical aspects of health to a certain degree, but we are always in charge of our mindset,” she said. “Of course there are horrible days and complaining is human, but if we step back, there are always gifts to be found, and hope can be continually redefined, regardless of how or if our disease progresses.”

If you or someone you know would like to share a story of illness and healing, contact us at amiller@healthstorycollaborative.org.

Photo by Ron Cogswell via Flickr.