Dr. Annie Brewster with Health Story Collaborative team members Michael Bischoff, center, and Jonathan Adler, PhD. While living with brain cancer, Michael shared his story on CaringBridge, and also led healing story sessions with HSC.
With COVID-19 running rampant and social distancing the expectation, these are unsettling and unprecedented times. Quite suddenly, everything is different.
My typically frenetic home life is quiet. No more struggles to get kids up and out the door in the mornings. No more school lunches to pack. No more shuttling my kids to their seemingly endless sporting events, shivering in ice hockey rinks or on the sidelines of lacrosse games.
I miss the chaos. I realize I find comfort in this chaos. Now it is quiet and this feels weird and uncomfortable.
Feeling Vulnerable and Grateful
Many of us are experiencing a new meaning of the word “togetherness” as we are cooped up with those close to us, on top of each other with limited diversions. Others are alone, trying to figure out ways to fill up the days, perhaps yearning for emotional and physical connection.
A friend who lives alone just told me that she has not touched another living being in more than three weeks. While this is new for her, I now realize that this is likely the norm for many people, even when we weren’t living in pandemic times. I had never stopped to think about this before.
Professionally speaking, as a doctor on the front lines, I am feeling pretty vulnerable. In general, I have a very high-risk tolerance, but now I am scared. At the same time, I am grateful that I have something concrete to do that feels useful. This makes it easier.
A Turning-Point Moment
For all of us, this is a turning-point moment. Our life stories have been disrupted and will be forever changed. Nothing is certain. It is hard to plan, because we don’t really know what we are planning for.
Recently, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Disease, predicted that we might lose up to 200,000 lives to COVID-19 in the United States alone. In his words, this pandemic will be “imprinted on the personality of our nation” for years to come.
How do we cope with this? Or, even better, how can we make this experience psychologically productive, an opportunity for growth?
Healing Through Storytelling
For the past 10 years, in addition to doctoring, I have dedicated myself to the craft of storytelling, with a specific focus on using narrative as a therapeutic tool for individuals facing illness.
At Health Story Collaborative, the nonprofit I run, we define “illness” broadly as any imbalance in the physical, psychological, or spiritual well-being, and “healing” as the process of moving toward balance and wholeness.
Our work is grounded in research that supports the health benefits of narrative medicine and we provide tools to help individuals reflect on and craft authentic, health-promoting personal stories.
So Many ‘Maybes’
The current state of the world is certainly one of imbalance, and many of us are struggling. Maybe we are physically ill and worry about being more at risk of infection and complications as a result. Maybe we live with individuals who are ill and worry about spreading the infection to them. Maybe we struggle with anxiety and depression already and are having a more difficult time managing during this strange time. Maybe we are lonely, now more than ever, and feel we have no one to lean on.
This is a time of collective angst. How can storytelling help us heal?
My belief in storytelling is grounded in personal experience. In 2001, I was diagnosed with multiple sclerosis, and this experience taught me some important lessons. I learned that our identities inevitably shift when we are faced with traumatic circumstances, and this includes life-altering medical diagnoses and global pandemics.
Rewrite Your Self-Story
I had always thought of myself as invincible. Nothing could stop me as long as I had willpower and perseverance. I struggled with accepting that I have a disease with no cure and lived in denial for years and only very slowly learned how to integrate this “brokenness” into my sense of self.
This required me to rewrite my self-story in a sense. This was hard, but not all bad. I am now living more honestly and authentically.
I have also learned how to live with uncertainty. For me, the scariest part of living with MS has always been the not knowing. So far, I have been incredibly lucky with very minimal and manageable symptoms, but I don’t know what my future holds.
Focus on Your Frame of Mind
I could be fine, or I could be significantly disabled, as MS is a disease with huge variability in terms of symptoms and outcomes. At first, I felt completely out of control and terrified by this unpredictability, but then, out of necessity, I learned to focus on what I could control … my frame of mind.
As Holocaust survivor Viktor Frankl said, “Everything can be taken from a man but one thing: the last of human freedoms, to choose one’s attitude in any given set of circumstances, to choose one’s own way.” We can’t always control the events of our lives but we can control our mindset or how we make sense of what happens to us.
We are the interpreters of our lives, the meaning makers. We are ultimately in charge of our own stories. It helps me to remember this during these exceptional times, as the crisis of COVID-19 unfolds.
Science of Storytelling
These personal realizations sparked my interest in the power of story. Meeting Jonathan Adler, PhD, now the Chief Academic Officer of Health Story Collaborative, grounded my intuitive understanding in science. I believe this science is directly applicable to what is happening today. I want to share the key concepts with you here, in the hopes that you can apply them to your own lives in real time.
- Dr. Adler’s research is grounded in the concept of narrative identity, or the belief that who we are—our identity—is shaped by the stories we tell about ourselves. It turns out that the stories we remember and choose to tell are the stand-out moments in our lives—the high points, low points and turning points. These form the scaffolding of our identity and make us who we are. What we are living through now with COVID-19 is certainly a turning-point moment, one we will all remember
- While identity tends to be fairly stable over time, it is not static. We are constantly constructing and reconstructing the stories of our lives. Identities shift. Living through this time of COVID-19 will shift and change all of our identities personally and collectively. While this is scary, it is also an opportunity. Change can be positive.
- How we tell the stories of our lives matters when it comes to mental health. Some stories do a better job at 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 these events. We play an active role in this meaning making. Ultimately, we decide what to focus on and how to shape our stories. As Dr. Adler says, we are both the main characters and the narrators of our stories. This is an empowering realization.
- Certain narrative themes—namely agency, communion, redemption, accommodative processing and coherence—are linked to positive mental health. The more these themes show up in our self-stories, the better our psychological wellbeing. 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.
Storytelling is Meaning-Making
In general, we make meaning out of our experiences retrospectively rather than in real time. Most of what we know about the health benefits of storytelling is based on how we tell stories of experiences that have happened to us, rather than stories that are in the midst of happening.
With that said, I believe that keeping these principles in mind as our COVID-19 stories evolve can only help us, giving us a greater sense of agency as we navigate these troubling times. Let us all apply these concepts to our lives, both today as we navigate this ongoing disruption as well as in the future, as we sift through our memories and make sense of what has happened.
Remember, you are in charge of your story, even if you can’t control what is happening. You are playing an active role in shaping your identity. These are hard times, but embedded in this struggle is opportunity for you to change, to become who you are supposed to be.
Share Your Story
Ask yourself: What can I control in this frightening time? What are my personal strengths and how have these strengths helped me to survive? What can I do to help others in need? Who has been there for me? How has this experience strengthened my relationships? What have I learned and how have I changed for the better?
Write this story down and reflect on what has been most challenging. How and why has this required you to change? What does this mean to you? Share your story. Keep writing and revising. This is how you will emerge from this experience whole, with new strength, perspective and self-awareness.
Annie Brewster is a graduate of Harvard Medical School and a practicing internist at Massachusetts General Hospital in Boston, where she works in urgent care. She is also a patient, diagnosed with multiple sclerosis in 2001. She has been collecting patient stories since 2010, including those of CaringBridge users Michael Bischoff and Caroline Wright, and is a frequent contributor to her local National Public Radio station, WBUR, in Boston. In 2013, Annie founded Health Story Collaborative, a nonprofit organization committed to empowering patients and their loved ones to find meaning, through storytelling, when confronted with illness. Annie also serves on an advisory panel of medical professionals for the CaringBridge How We Heal project. She is author of the upcoming book, The Healing Power of Story: The Art and Science of How Sharing Your Personal Story Can Improve Your Health.