Writing and Sharing Your Story Can Help You Navigate a Serious Illness

Michele Foley is not the type to overshare. In fact, after she went through successful treatment for malignant metastatic melanoma in 2015, she rarely spoke about her medical ordeal. "I didn't want to tell too many people about my diagnosis and treatment because I didn't want to bring them down," she recalls. "It was too sad and too personal."

But when her son Andrew enrolled in a health storytelling class and asked his mother to participate in a project with him for the class, she overcame her hesitancy. "He said it could be helpful to other people…and surprisingly, it turned out to be therapeutic for me, too." 

In fact, she experienced a ripple effect when she read her story out loud to others. At the conclusion, she notes, "At least 12 people came up to me and thanked me for sharing and said that they, too, had tried not to tell many people about their illness. Like me, they wanted to protect them. That was a very powerful moment for me."

Dr. Annie Brewster, the Harvard physician leading the class and author (with journalist Rachel Zimmerman) of "The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss," says, "Human beings are hardwired to tell stories about their experiences, and we all feel less alone and more connected when we tell our stories in the community." 

Brewster is the founder of Health Story Collaborative (HSC). This nonprofit group provides opportunities for people to engage with others, share their stories and hear from others navigating similar health struggles.

The impetus for HSC came from Brewster's experience of being diagnosed with multiple sclerosis (MS) at 32. The diagnosis was at odds with how she saw herself — a doctor in training, an athlete, a mother and a wife. "I had always convinced myself that I could get what I wanted as long as I tried hard enough," she says, "but I couldn't try myself out of MS."

Although she was able to finish her training and begin her career as a doctor, her body eventually reminded her of the stark reality. Fearing that her illness and the label of "sick person" would define her, she decided to embrace it as just one part of the whole that is her.

"I couldn't deny my MS anymore because I was having symptoms," she says, "but I could find a way to redefine my illness so it didn't dictate my life. This allowed me to get 'unstuck' and move forward." In tandem with this realization, she shared her experience on a radio program in Boston and then in the "Well" column of The New York Times.

"Once the truth about my MS was public, I felt like a fuller version of myself. Telling my story made me feel lighter, stronger and less alone," she says. Bolstered by research showing that storytelling can improve mental and physical health and can be healing, she decided that facilitating story writing and story sharing would become her life's work.

"We are all faced with moments in our lives that we can't control," Brewster says, "but what we can control is what we decide to focus on and how we want to move forward. We can take charge of the story we tell ourselves and others."

The process isn't easy, though, says Foley, and it requires re-living some painful memories. "I did about 10 to 20 drafts of my story, and Dr. Brewster and her colleague Dr. Jonathan Adler kept asking me to dig deeper into what I was thinking about my cancer experience rather than how it was affecting others or how generous they had been toward me." 

They also encouraged her to write the story and not worry about how she wrote it, which was difficult for her as an English teacher. She says,"I wanted the essay to be pretty, and I focused on the writing more than on what I was saying. I even threw in some poetry!"

Brewster reinforces the notion of authenticity over style, saying, "You want to think about what your experience means to you, not what it will mean to other people, and you want to home in on a salient story or scene that demonstrates how you felt at the time."

To help you write your own story, you can see examples of others' stories on the HSC website and in Brewster's book. She has also created some writing prompts to initiate the process, starting with finding a quiet space where you can be alone to think and remember. Then:

1. Strive to get a first draft down, no matter how rudimentary or rough. Remember, you want to focus on the writing process, what your story means to you, and how you felt, rather than on the audience that might read your story or the writing style.
2. Think about a scene from before you became ill that represents who you were then and what was important to you. Be specific — rather than writing about a trip, write about a particular dinner you had and how you felt about it.
3. Next, think about how you felt when you received your diagnosis and after as you processed the experience.
4. Look back to remember what was the most challenging part of your experience.
5. Finally, write about something positive from the experience.

And then comes the revising. As any writer will tell you, the first draft is never the final draft. "We know from the scientific literature that focusing on key narrative themes can be therapeutic," says Brewster, "and so we encourage people to think about these themes as they revise their stories." They include:

• Coherence — crafting a story that makes sense and is easy to follow;
• Agency — finding what you have control over in your life even amid illness;
• Communion — feeling bonded with others and a part of a group; and
• Redemption — seeing the good that can come from bad situations.

"It's a staggering thing to face the reality of a medical crisis," says Foley, "but you can come to a place where you believe you are going to be all right — and telling your story can be a huge tool in that process if you do the work to find what is meaningful to you from the experience."

Brewster adds, "Living with MS and telling my story have made me a better person. I am more open, empathetic and tolerant. I am more mindful and a better listener. I am also a better doctor, and I appreciate the impact of my words and actions on my patients. Storytelling has changed my life, and I hope it can change yours, too."