Own your story
We can’t always control what happens to us, but we can control how we make sense of what happens to us
Annie Brewster, assistant professor at Harvard Medical School, practicing internist at Massachusetts General Hospital, founder of Health Story Collaborative, and author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss
I’ve never met the woman who changed my life, but I know exactly who she was. It was a torrid summer and I had just turned twelve. Because of one of those economic downturns that happen to families, there was no vacation for us that year. While my best friend was bathing in the sun on the Riviera, I sat on my parents’ couch with a book. On its cover, there was a young and skinny woman sitting cross-legged on the floor, next to her leather luggage and a muscular Marine. She wore a khaki shirt with rolled-up sleeves, long pants, a pair of moccasins, and a big, square male watch that took up all her left wrist. Her hair, parted in the middle under the black sunglasses she wore on her head, was divided into two braids that reached her shoulders. The braids gave her a school-girl’s look that contrasted with the intense expression of her sideglance. Printed in orange characters across the page, the title read: “Nothing and so be it.” And it echoed the way I felt in contemplating my lonesome summer. As soon I opened the book’s hardcover, it took me across space and time to the humid and perilous climate of the Vietnam War. In the wake of the question: “What is life?, I followed the author in her war reportage. I met the crew of journalists that worked at the JUSPAO (Joint United States Public Affairs Office) in Saigon; I sat in the cockpit of a combat plane on a mission in the jungle; I listened to a conversation with the police chief General Nguyễn Ngọc Loan (yes, the guy shooting a Viet Cong in a street in Saigon); I read the words in the diary of an unknown Viet Cong and the words of an equally unknown American soldier in Khe Shan - “…day and night, I hear them dig under the sleepers.”
I stood on a balcony in Plaza of the Three Cultures in Mexico City when the army shot the protesters against the Olympic Games in 1968 including my author. After recovering, she wrote the last chapter on a beach in Mexico, where “thousands and thousands of bodies stretched out, sunbathing along Copacabana beach, motionless, indifferent, irresponsible to whatever was happening around them or in the world.” Page after page, I left a black and white world behind me and I inched closer to a new awareness, that “life was more than the time between when one is born and the time one dies. Life is something to be filled well, without wasting time. Even if to fill it well, it breaks.”
It is difficult to see what is hidden in plain sight and I never reflected upon the transforming power of stories until I encountered the book of Annie Brewster, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss. Annie is assistant professor at Harvard Medical School, practicing internist at Massachusetts General Hospital and founder of the Health Story Collaborative. As she explains in her book, it’s not only the stories we read and listen to that shape us, but also the ones we tell. Choosing the words, choosing the narrative doesn’t simply help us to make sense of our world, it forges our views, the very idea of ourselves, and therefore the direction of our lives, in the present and in the future. Ahead, we have a universe of possibilities.
In the book you discuss not talking about your MS diagnosis for quite some time. What prevented you from doing so?
It is true that I kept my MS diagnosis private for many years, telling only my family and my closest friends. I felt ashamed, broken, blemished. I was afraid people would judge me, think less of me, worry about me, and see me as one dimensional, a person with a chronic illness, and nothing else. I didn’t want that. I was also angry at my body for failing me. I couldn’t have articulated all of this at the time, but I can see it clearly now, in retrospect. My diagnosis basically flung me into an identity meltdown. Until then, I had felt infallible. I believed that if I put my head down and worked hard, I could overcome anything. Naïve, yes, but that had been my experience until then. I was an athlete. My body had always worked well for me. I was driven, feisty and confident. MS—a disease with no cure – didn’t fit with my sense of self.
But ultimately, I recognized that my secrecy about my diagnosis was hurting me. I was rejecting a part of myself. I realized that in order to heal, I had to integrate my diagnosis into my self-story. By “heal” I don’t mean “cure.” MS has no cure, at least not yet. For me, healing is about owning my full self, and figuring out how to move forward with a sense of strength, hope, and possibility despite the hardships of my disease. Even more, it is about looking for meaning in the suffering, because what’s the alternative? Storytelling has been essential to my own process of healing.
What do you see as the "hidden power" of storytelling: how do stories help us to shape (or change) our worldview?
For me, the power lies in recognizing that we have some control over our stories. We can’t always control what happens to us, but we can control how we make sense of what happens to us. How we tell the stories about the events of our lives, what we choose to focus on, is up to us. We can’t change the facts, but we can decide how we make sense of the facts. As my research colleague Jonathan Alder, PhD, has said, we are both the main characters and the narrators of our stories. We play an active role in giving them shape.
Stories are how we make sense of our selves and our world. The concept of narrative identity suggests that who we are—our identity—is formed by the stories we tell about ourselves in a continually evolving process. As we integrate significant life experiences into our self-stories, our identities can shift. This can be scary, but it is also an opportunity.
In terms of health, it turns out that some stories do a better job promoting psychological wellbeing than others. This has less to do with the events on which our stories are based—or what happens to us —and more to do with the meaning we make out of what happens to us. According to research, certain narrative themes—agency, communion, redemption, accommodative processing, and coherence, among others—are linked to positive mental health. The more these themes show up in our self-stories, the better our psychological well-being. Agency is feeling like you have control over what is happening to you; communion is feeling close and connected to others; redemption is seeing bad experiences as having good outcomes; accommodative processing involves revising our existing self-stories in response to new experiences in order to make them meaningful; and coherence is about telling our stories in a way that makes sense, to us and to others. At Health Story Collaborative, our work is centered on trying to help people craft, edit and ultimately share their stories, with an eye toward developing these themes. The Healing Power of Storytelling guides readers through this process.
Research also demonstrates mental and physical health benefits related to listening to stories told by others, in community. Stories connect us.
We believe that only important stories can be told. The other side of the coin is that by considering our story irrelevant, we make a judgment about ourselves. What prevents us from considering our stories as worth being told?
No story is irrelevant, in my opinion. Authentic stories, told honestly, are always important, and will undoubtedly resonate with others. We all have something to say. Stories generally involve turning point moments, but these moments don’t have to involve big, dramatic events. Small internal shifts can be profound.
There’s a whole universe of meanings embedded in the word “patient.” Closer to the concept of patience, there seems to be the idea of enduring suffering in silence. What benefit can we get by reconsidering this format?
Suffering in silence can fuel isolation, self-rejection, and shame. To the contrary, speaking out has the potential to empower us. Sharing our personal stories helps us to integrate and make sense of challenging experiences, such as getting a medical diagnosis, into our lives. Becoming a “patient” can be traumatic and incorporating a new diagnosis into our identity takes time. Emerging research on post-traumatic growth suggests that we can thrive and grow in the wake of a traumatic experience if we are able to make meaning out of what has happened to us. Storytelling is essential to this process.
From a practical standpoint, we are never going to get what we need if we suffer in silence. As patients, we need to advocate for ourselves. This can be challenging in the context of our medical system, where the power dynamic privileges doctors and face-to-face time between patient and provider is so limited. But we need to believe that our personal experience matters, and we, as patients, are the true experts when it comes to our health and well-being.
Sharing one’s story is also a way to create a bridge and reach out to other people. What has your experience been with storytelling as a tool for building community?
We all feel stronger and more connected when we hear stories of shared humanity and vulnerability. In the words of social science researcher Brené Brown, “vulnerability is the glue that holds relationships together. It’s the magic sauce.” It’s true! I know I feel closer to people who allow themselves to be vulnerable. It makes me feel more at ease, like I can be myself, breathe a little easier and be the imperfect human being that I am. I often say that storytelling is a relational act. When I share my story with you, you might be more willing to share your story with me. Something opens between us. Moreover, how you react to my story will change my story going forward -- maybe only slightly, but it will change nonetheless. And hearing my story will change your story, and so on. It is a never-ending dance.
Storytelling builds community and community is good for us. Research clearly demonstrates that close relationships are good for our health and social isolation is bad for us, associated with earlier cognitive decline and increased mortality.
Stories tell the “what” and the “why.” Does this force us to question our meaning?
The “what,” or the events that a story is built around, provides structure, but the “why,” our interpretation of the events, the meaning we make out of what happens to us, is in fact more important. It is this process of meaning-making that gives shape to our narrative identity.
When it comes to mental health, meaning-making is essential to well-being. When something happens to us in our lives, we must integrate it into our personal story. When the event is small and relatively inconsequential, we engage in assimilative processing, meaning we can just fold it into our existing self-story. When something more significant happens, however, this integration is more challenging. Indeed, we are required to change our self-story to find meaning in what has happened. This is called accommodative processing. This is hard work, but it is also very good for us, and an opportunity for growth.
What have you learned in telling the story of your journey with chronic illness? Has your approach to life changed in any way?
As I outline in the book, storytelling has changed my life for the better. Sharing my own story about living with chronic illness and listening to stories told by others has been essential to my own healing journey.
As a patient, I have learned that I have more power than I originally thought. While obviously none of us chooses illness, we can choose how we handle the challenge. While we can’t entirely control how our illness progresses, we can control how we make sense of the situation, and this matters when it comes to health and well-being. Of course, some days, it will be impossible to feel a sense of agency, to feel connected to others, to find the redemptive threads in our story, and these inevitable lows are to be expected. In fact, they are an important part of the story and add depth and integrity. Meaning-making happens when we step back and reflect, not necessarily while we are in the middle of a challenging day. It isn’t always easy, but in the end perhaps it is all we have.
As a doctor, I have learned to appreciate the impact of my words and actions. Delivering a diagnosis to a patient is life changing. I have experienced this firsthand. As doctors, we are with patients and their families at vulnerable moments and who we are in these moments matters. We become a part of the story, and potentially major characters. While it is our job to share our knowledge and to offer our opinions, we need to do so respectfully and without our egos getting in the way. Our job is to guide and to support, not to direct; to help patients determine what is “right” for them, not to be “right” ourselves. Our job is to be with patients in times of need, and ideally, to help them to find meaning and to move toward optimal well-being amidst struggles.
Storytelling has helped me build community, and to feel connected to others. Creating time and space for storytelling around illness, trauma, and loss has become my life’s work. It has given me purpose. I am awed and humbled by all the incredible human beings I have had the privilege of engaging with on this path.
The stories our society has told us about illness, grief, and aging can influence how we see ourselves and the choices we make. Is this something you've experienced? How can we push back against this narrative?
While I firmly believe that we can “take charge” of our personal stories, it is important to remember that this isn’t always easy. The environment we live in plays a central role in molding, and sometimes constraining, our personal stories. We are all embedded in a cultural context, with existing and often powerful dominant narratives all around us. These “master narratives,” as they are referred to in the research, have the potential to limit the personal stories we tell, because they narrow the plot lines we see as available to us.
For example, in North American culture, elders are often portrayed as diminished, dependent, and burdensome, as opposed to strong, wise, and worthy of reverence, as in other cultures. Similarly, individuals with illness and disability are often conceived of as weak and less than, a drain on society’s resources. Dominant cultural narratives are hard to change, but they can and do change over time, one individual story at a time. Each story that counters an existing “master narrative” adds to our collective power and moves the needle to promote social change.
Can your work with healing and storytelling be applied to aging and ageism? I would love to hear your reflections on that.
Absolutely! Aging comes with inevitable loss, and with that loss, grief. However, it also comes with many gains—wisdom, perspective, and deepening relationships, to name a few. Engaging with our personal stories of what it means to age will help us to move forward with hope, strength, and positivity, while also recognizing what is hard. The prompts outlined in the book can be directly applied to stories of aging and will help anyone who is navigating the aging process find meaning on the journey.
As outlined above, we can push back against ageism one personal story at a time. By bringing to light the beautiful, messy, rich complexity of what it means to age through personal narrative, we can shift the broader, and very limited, existing cultural narrative.
