Annie Brewster | 03.28.17
In the words of treasured American author Joan Didion, “We tell stories in order to live.” Stories connect us as human beings, and help us find meaning in this sometimes-baffling world. As a patient living with multiple sclerosis, I know this to be true. Stories have sustained me on my journey.
In the context of illness, our stories can help us heal, both individually and collectively.
Sharing is an ‘Act of Courage’
Sharing who we are, authentically and without apology, is an act of courage, a radical display of self-acceptance and self-love. Doing so can definitely be scary, but the end result, when such sharing occurs in the context of a supportive audience, is empowerment, wholeness and connection.
Shame and fear lose power when we give them voice. In telling our stories, we step into them, take ownership of them, and nurture ourselves in the process. And hearing other people’s stories is a gift and a tremendous relief. We are not alone or unique in our vulnerabilities, we realize.
You are not alone or unique in your vulnerabilities, you realize.
My Diagnosis is Part of My Story
We are all human, more the same than we are different, and we are all flawed! Mutual honesty and transparency are freeing for all involved. We can be who we are, without pretense.
I have written previously, in this space, about my initial diagnosis of MS, about how I lived in denial for a long while, and then with shame, feeling angry with myself for being sick. I struggled to integrate this diagnosis into my life, but ultimately, in order to find peace and to heal, I had to accept it as a part of my story.
I had to embrace myself wholeheartedly, messy diagnosis and all. This took years. Slowly, over time, I revised my self-story, and am still revising it today.
Making Sense of My Illness
What scared me most about my diagnosis was that it would somehow become synonymous with my identity, overwhelming all other aspects of myself with the label of a “sick person.” I needed to find a way to make sense of my illness as something that makes me stronger, not weaker.
I did not want to get stuck in victimhood.
I suppose I am wired this way. I have always preferred movement and action to stagnation and inaction. The prospect of getting stuck terrified me.
Shaped by the Stories We Tell
Over time, I have come to understand that I am not powerless in the face of my illness. Central to the social science research on the health benefits of narrative is the concept of narrative identity, the belief that who we are—our identity—is shaped by the stories we tell about ourselves in a continually evolving process.
Yes, what happens to us in our lives matters, and sometimes the events of our lives are beyond our control, but what matters more is how we make sense of what happens to us, the meaning we make, reflected in the stories we tell.
You Choose Your Attitude
Holocaust survivor Victor Frankl calls this “the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” No one can take this away from us.
And it turns out that how we make meaning—how we tell the stories of our lives—directly impacts our health.
Certain narrative themes—agency, redemption, communion and coherence—have been linked to positive mental health, even in the face of physical health challenges.
Bottom line: we are in charge and we don’t have to get stuck. This is true even in the face of incurable illness. When confronted with diagnoses that seem out of our control, storytelling can be empowering and liberating.
The Good and the Bad
But let’s be honest, being sick stinks, and the hard parts of illness are essential parts of the story and should not be ignored. This isn’t easy. The key is not to get stuck or fixated on the hard parts, while also not glossing over them.
We need to broaden our stories, to make room for the good and the bad, the dark and the light, for seemingly contradictory elements. This is where healing begins. No one said it had to be neat and clean.
Sharing Might Help Others
For many of us (myself included), sharing our own stories can feel self-indulgent. It is uncomfortable to think about how this process will benefit us, even though it clearly does. It is easier to think about how sharing our stories might help others, and indeed, our stories do help others!
Research has clearly shown that listening to other people’s stories can improve both mental and physical health, and perhaps even behavior.
And research has also shown that how the listener receives the story can in turn affect the health of the teller. An attuned, empathetic listener boosts health.
I Value My Own Story
Storytelling is a relational act, an intricate dance in which “tellers, hearers, and stories meet to constitute themselves.” How our story is received influences what the story means to us and how we will tell it moving forward, and our identity shifts ever so slightly in response. And those receiving our story will also be changed, as our story becomes a part of their story, and so on.
I have shared in this space before that I was slow to let others into my health journey. In truth, it took me a while to embrace and value my own story. But once I shared it with someone, someone who was not one of my closest friends or family members, I started to understand its power.
‘I Have MS, Too’
In my role as a doctor, I found myself having to deliver the news of an MS diagnosis to a 23-year-old patient. She was distraught, in tears, convinced that her life was over. She would never work. She would never get married and have children. She would be limited and diminished from here on out.
In that moment, I made an offering. “I have MS, too,” I told her.
“I work. I have four children. I run, ski and play hockey. The future is uncertain, and this is scary, but in this uncertainty there is room for hope.”
While this was a somewhat controversial boundary-crossing in the field of medicine, I feel certain that it was the most healing thing I could have done in that moment. Her face brightened. Possibility replaced doom.
My Diagnosis Can Help Others
There was healing in this for me, too, of course. This experience showed me that my diagnosis is more than just a black mark on my life. It can help me to help others, to do the work of healing that I trained to do as a doctor, but perhaps more authentically and more poignantly.
While I don’t generally make it a habit of sharing personal details about my life with my clinical patients, this experience was pivotal in my decision to create Health Story Collaborative, a nonprofit dedicated to facilitating storytelling among individuals navigating health challenges.
Take the Risk: Share Your Story
In that moment, I saw clearly and with certainty that story sharing can heal both storyteller and story receiver. And this became a part of my story. Without noticing, I grabbed hold of agency, redemption, communion and coherence.
Patients and caregivers, you all have stories to share.
Yes, it is scary, but your stories are important and they will contribute to healing.
I encourage you to take the risk.