Rx Narrative: Story As Medicine
Last Friday I had the great pleasure of presenting at DotMED The Creative Medicine Conference, on the role of story in medicine. I spoke about how healthcare is at heart a narrative activity and how attending to the stories of illness can become a bridge to build empathy and compassion in healthcare. Below is a slide-deck of my talk and I’ve highlighted some key points. As always, I’d love to hear your thoughts on this topic.
Why Stories Matter
Stories have existed in our culture from the beginning of time; they transcend time, culture, and place. As my fellow conference speaker, Dr Louise Aronson has said, we use stories to derive meaning from experience and to pass along knowledge, values, and wisdom.
Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.
in 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener. 
Story As A Bridge To Compassion And Empathy
Neuroeconomist, Paul Zak conducted research which showed that reading simple, humanistic stories actually changes what is in our blood streams. He took blood samples of subjects before and after reading a story about a father and his terminally ill son and found after reading the subjects blood levels contained an increase of two interesting chemicals – cortisol, which focusses our attention; and oxytocin, the human bonding or empathy chemical.
Empathy is an essential step towards compassion.
This research suggests that we can use story to build a bridge of empathy and compassion in medicine. To enter into an experience which often lives outside our own understanding requires finding a point of entry. Stories can be that point of entry.
To quote Jay Baruch M.D.
Story becomes the ground that patients and healthcare professionals travel together.
Standardized vs Humanizing Care
Our current bio-medical health care system reframes illness to disease, reducing the patient and family experience to pathology. The medical chart becomes the official story and the doctor the teller of the patient’s story. What happens when the patient narrative doesn’t match the physician’s version?
Conflicting illness stories will hinder treatment because the meaning we give to our illness is significant in terms of managing our illness and contributing to our well-being. Medicine organized around meaning encourages more humanizing care rather than the current standardized care. I shared the story of my own experience as a young woman diagnosed with breast cancer and how my doctors didn’t think to discuss fertility preservation options with me before I started treatment.
Perhaps my doctors assumed what mattered most to me was saving my life– and of course that mattered a great deal to me – but what also mattered was the story of that life to be saved. If we could have had a discussion about who I was – not just another cancer patient – but a young woman with hopes and dreams of a future with children – maybe we could have made different treatment choices in terms of the toxicity of the chemotherapy or explored fertility preserving options in the brief window of opportunity that exists before treatment begins.
But my story went untold.
So while I received professionally competent care the legacy of that care left wounds that medicine couldn’t fix.
For that I turned to storytelling.
Blogging Our Way Towards Healing
Stories are antibodies against illness and pain ~ Anatole Broyard
The conventional expectation of a narrative involving a past leading into a present that foretells a foreseeable future is profoundly disrupted by cancer. When we become ill and that story that has previously guided our lives is taken from us, we need to find a new story. Stories of illness are like maps that help us navigate the uncharted waters from the kingdom of the well to the kingdom of the sick and back again, to borrow Susan Sontag’s metaphor.
Stories are how we shape our world and understand our lives. Illness brings into sharp focus our basic human need for stories. Stories help bridge what sociologist Arthur Frank in his seminal book, The Wounded Storyteller calls “ narrative wreckage” – the point at which our old life plot is no longer valid, and we need a new story to continue life’s journey.
Frank believes that seriously ill people are wounded not just in body but in voice. Through writing and sharing my story on this blog, I rediscovered my own voice, found meaning and created a foundation for healing after the trauma of breast cancer. I know I am not alone. Personal narratives shared through social media are an area of rapid development in communication among cancer survivors. Many of you have testified to the healing power of writing your story and the sense of connection that comes from blogging in a community. Stories provide a way of literally making sense of what is happening in our lives. In the telling of our stories we find a new context, meaning, and perspective.
Patients have been telling stories and sharing their journeys long before social media existed. Social media can amplify these narratives in powerful ways. ~ Iris Isip-Tan MD
Our blogs offer healthcare professionals a unique glimpse into the window of the lived experience of illness. Reading them, you will find grace, humour, persistence, and courage in the face of fear, grief, anger, pain, fatigue, and loss. It makes you appreciate the strength of the human spirit in the face of the fragility of the flesh. These blogs can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. They are a way of discovering that a patient isn’t a disease with a body attached, but a life into which a disease has intruded.
And just as cancer is not one disease, our experience of cancer is not just one story – we have an opportunity to witness the diversity of experience through reading the narratives contained in blogs. This to me is what is so special about our blogging community – it’s a place where you can tell your story even if it doesn’t fit the conventional expected narrative of illness. And as more stories are told, a community of storytellers becomes enriched and empowered by the diversity of the narratives being shared.
 PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.