This is the first in a series of articles about the power of patient stories.
“I tried all sorts of storytelling to write my way through my cancer. I wrote in my journal. I handwrote in the variety of little notebooks that I carried around with me. I typed out thoughts on my phone. I texted myself…” -Bird’s Eye View book
Stories are the way patients convey our experiences in health care. Stories don’t have to be works of literature, as they can be as simple as documenting what happened to you. They don’t have to be written in complete sentences, published or spoken in public to be true.
I am a writer and I struggled to write when I was in cancer treatment. My journal contains rambling accounts of how I felt going through radiation. Reading the entries now, I reflect back that my experiences had an undercurrent of fear. Writing was the beginning of my healing, as my words validated what happened to me was real, even though many people minimized my suffering and told me how ‘lucky’ I was to have a ‘good’ kind of cancer.
Stories help make sense of random events and goodness knows, health care is a confusing and random place. It can help us take back control from helpless situations, for stories are owned by patients, They are ours alone.
It is important to note that you don’t need the written or spoken word to tell stories. You can tell your own story creatively through pictures, music or visual art too.
The book The Wounded Storyteller by Arthur Frank is a classic resource for patients who want to share stories, even if it is just for themselves.
“Storytelling is less a work of reporting and more a process of discovery,” says Frank. The more we reflect on our stories, the more we understand our experiences.
He explains how difficult it is to tell a coherent story in the midst of a health crisis, yet health care demands we do so every time we present at the doctor’s office or emergency room. He talks about how the health system prefers “restitution” stories of how ‘I was sick, cured by the heroes in the hospital and now I’m better than ever!’ This is why constructive patient feedback is often shunned by health systems – because our stories often don’t fit into their own narratives.
How do you start to tell your story? Simply begin today. Pick up your pen or camera to tell – first yourself – what happened to you.
The next article in this series is if you make the leap to start sharing your stories publicly to advance health improvement, whether you do it for advocacy reasons, in committee meetings, with researchers or behind the podium.
About the author: Sue Robins is a health care activist, speaker and author. Her new book, Ducks in a Row: Health Care Reimagined, is a scrappy challenge to the established health care world. Her first book, Bird’s Eye View: Stories of a life lived in health care is a memoir of her experience as a caregiver and cancer patient. Sue offers storytelling workshops to both patients and staff groups. www.suerobins.com.