“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:
Becoming a patient myself led me to ask a question I think was missing from my training: what do patients really want when confronting a serious diagnosis? If you are or have been a patient, think about what this means to you.
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. 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. I wanted to know whether it was possible to find strength through illness, despite the obvious hardships. Why do some people feel victimized and bitter when they get sick while others hold on to gratitude? 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.
As humans, we crave connection: our suffering diminishes when we know we’re not alone. But perhaps, like me, you are a person who does not warm to the idea of going to a support group. This was especially true for me in the beginning, before I had fully come to terms with my diagnosis. I wasn’t ready to define myself as someone with MS. I wanted to hear stories from people living with this diagnosis, but I was afraid of what they might say. I imagined that all it would take is one person caught in a negative spiral to hijack the entire group, and I felt too fragile to handle this. I was craving stories, but I wanted to listen on my terms, to be able to hit the pause button when necessary.
I looked for such stories online but couldn’t find them, at least not easily, and was spurred to action. Maybe, I thought, I could use my own experience as a patient to give others what I had wanted most: authentic stories of illness and healing that told the truth about the struggles but also highlighted hope and possibility. I decided to record patient stories myself and to create a digital library to make stories available for others facing illness—honest stories with a narrative arc, not just sound bites.
Overcoming Shame
At the same time, I knew how healing it had been to share my own story, how breaking through the shame and fear of going public with my illness helped transform me as a patient and a physician. As a doctor, I had never really understood what it means to receive a life-changing diagnosis. I thought I did, but I didn’t. I was superficially focused on the logistical challenges of managing a health condition, but I completely overlooked the deeper implications. Medical care is often framed as a detective hunt, a mystery to be solved. When a diagnosis is reached, doctors experience a sense of closure. End of story. In fact, for the patient, the story is just beginning. As a patient, I have learned that a medical diagnosis can, in fact, challenge our very sense of self—our identity. It took me a while to get my bearings, but storytelling helped me find my way. By listening to the stories of others and by telling my own, I was able to redefine myself and to come out feeling stronger. I encourage you to do the same. Be open to receiving stories in community. Listen with presence and respect, without judgment. Dare to engage with your own story—craft it with intention, share it with a supportive audience, and take in meaningful feedback. Doing so will allow you to better integrate your illness into your life and more fully understand and embrace a new identity. I hope that you can find what I did: a feeling of wholeness, self-acceptance, and healing.
From The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss by Annie Brewster with Rachel Zimmerman, published by North Atlantic Books, copyright © 2022. Reprinted by permission of publisher.
