“When an illness forces you to reconsider your entire life, you inevitably have questions, and many of these questions can only be answered by people who have lived under the same conditions.”
Fortunately, the online health community offers patients and caregivers a place of support, education, and empowerment – people who get it.
“It turns out that many people yearn for stories about others who have faced similar challenges. You may wonder how others moved forward in the face of hardship and what made them feel better. I know I did.”
These are the words of Annie Brewster MD, an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, a writer, a storyteller – and a Multiple Sclerosis patient leader.
After her 2001 diagnosis, Annie shares, ” I longed for stories that honored the pain and the suffering as well as the surviving and, ideally, thriving. What I really wanted was hope—not necessarily of a cure, but hope that I could once again feel that I was in charge of my own life. I wanted to feel a sense of possibility.”
This longing spurred into action. She started recording patient narratives in 2010 and, integrating her personal experiences with the research supporting the health benefits of narrative, founded Health Story Collaborative (HSC) in 2013. But she wasn’t stopping there. She recently released her new book, co-authored with journalist Rachel Zimmerman, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss (North Atlantic Books) where she uses her expertise as a doctor and a patient leader to process the difficult emotions that come with a life-changing diagnosis and the positive impact that comes along with sharing our story.
In The Healing Power of Storytelling, Brewster and Zimmerman use personal narrative, science-based research and concrete guidance to show patients, families and care providers how to craft and share their own stories in order to heal and move forward. The book offers extensive case studies from Dr. Brewster’s years of experience as a doctor working with patients, family’s and other care providers. Stories include people coping with terminal diagnosis; families grappling with grief, loss and trauma; individuals, families and health practitioners impacted by the opiate crisis; mental health diagnosis; and more. Also included are “takeaways” at the conclusion of each chapter and practical exercises and prompts incorporated throughout the book.
Whether you are brand new to the online health community, or you’ve been sharing your story for years, this book is at the top of our list when it comes to building your patient leader skillset!
Patient Leader Network Bonus:
Keep reading for one of our favorite excerpts from the book: