COVID's wrath has left tales of woe: 2 years in, owning those stories is helping some heal

As the United States was shutting down in March 2020, dozens of doctors, nurses and patients and others gathered on Zoom to share stories.

The session proved so popular that similar groups now meet weekly in five languages, with as many as 100 or more participants as far away as Chile, Italy, Japan, the Middle East and Australia. 

For an hour each week, they discuss images, analyze pieces of text, write and read aloud their own writings. Anyone is welcome.

The gatherings help participants feel less alone, less afraid and better able to cope with the events of the world and their own lives, said Dr. Rita Charon, an internist who leads the effort as head of Columbia University's Division of Narrative Medicine.

"It is coming together to articulate what isn't even known until you put it into words," Charon said.

Charon is part of a larger movement of experts who use storytelling to help people recover from trauma, including experiences with COVID-19.

Two years after the declaration of a global pandemic by the World Health Organization on March 11, 2020, many Americans are still coming to terms with their lingering grief, sense of loss, loneliness and anger. 

Narrative medicine and storytelling can help, Charon and others said. 

Decades of research has shown that people can deal better with some of their most complicated emotions by writing and editing their own story. Through a series of guided writing assignments and revisions, Dr. Annie Brewster leads participants in her Health Story Collaborative. 

Brewster, an internist at Massachusetts General Hospital who has multiple sclerosis, has coached patients with terminal diagnoses and life-changing illnesses, as well as health care workers struggling with the stresses of their job.

Describing those experiences, and particularly honing them to bring out certain themes and sharing them with others, can help people come to terms with challenging experiences or diagnoses, she said. It enables them to become the narrator of their own story, rather than a victim of events, said Brewster. who, with journalist Rachel Zimmerman, last month published the book, "The Healing Power of Storytelling." 

Everyone has a different COVID-19 story, Brewster said but "it's been a big turning point for many, many people – probably multiple turning points."

Writing about those key moments can help people make sense of them, she sad. 

"If we can think of it as something that is going to push us to a new place and change our stories a little bit, there's power in that and there's some hope in that," Brewster said.

Healing stories  

Working with Brewster helped Keisha Greaves accept and cope with her diagnosis of muscular dystrophy.

Now, Greaves, CEO and founder of the Girls Chronically Rock clothing brand, has put her fashion training to use designing clothing for others with disabilities and a line of T-shirts with empowering slogans.

In the pandemic, she used the same tools to help cope with the isolation and fear she felt being someone at high risk for a severe COVID-19 infection.

"It helped me be more confident and express what I'm feeling," said Greaves, who has spent the last two years mostly alone, except for occasional visits with family members and aides who help her with tasks she can no longer do herself.

Living with muscular dystrophy, she said, she was already used to wearing a mask in public, sanitizing her hands frequently and being careful.

Blogging about her experiences during the pandemic helped her adapt, get support from her community and better connect with friends and personal assistants, she said. 

Listening to other people's stories is also inspiring and motivating, said Greaves, who spends a lot of her spare time watching TikTok videos. "When I see someone like myself – Black, African American living with a disability – I'm like 'Wow, look at her!' … It sucks living with a disability, but she's striving and she's expressing herself."

Lara Wilson, who has also gone through Brewster's story collaborative, now uses storytelling in her own practice with writers and others. 

Participation in her nonprofit Be Well Be Here "blew up" during the pandemic, she said, as more people felt the need to join communities, if only virtually. "COVID invited us to say 'How can I take care of myself in a new way?'" Wilson said. "We all want to be heard."

Sharing your story with others - or not

Ashwini Ashokkumar, a postdoctoral fellow in social psychology at Stanford University, said there's both a social aspect to telling your story to others and power in writing down your thoughts for your own sake. 

She collaborates with James Pennebaker of University of Texas at Austin, who developed an approach called "expressive writing" to help people work through their trauma. For a handful of successive days, people sit down for a limited amount of time, usually about 15-20 minutes, and write about how they're feeling.

They don't have to worry about writing grammatically or beautifully. No one is going to grade or read it.

The writing is intentionally private, with no outside audience, just an opportunity for someone to come to terms with their emotions by putting them on paper. It's meant to last only a short time, she said, so people make some sense of their experience, but don't ruminate on their situation.

"There's a lot of evidence across traumas that this is beneficial," Ashokkumar said. "When you write these narratives, it helps you make meaning or sense of your experience."

Many traumas, like a cancer diagnosis, are deeply personal. With COVID-19, although each person had a different experience, everyone has gone through it together. Taking this big-picture perspective on one's own last two years could also be helpful, Ashokkumar said.

COVID-19 has been deeply isolating for most people, tearing them from communities at work, as well as from social groups and religious organizations. 

In survey data Ashokkumar and her colleagues conducted on more than 20,000 volunteers, mostly after the first year of the pandemic, people reported feeling much more anxious and less connected to friends and neighbors than before the crisis hit.

Research from earlier communal traumatic experiences, like earthquakes, shows that people bounce back faster from tragedies if they come together, but that's been impossible to do in person for most of the last two years, she said.

Telling stories within a community, even online, could help "increase the sense of community and feeling that we're all in this together," Ashokkumar said.

Humans evolved to tell stories to help us navigate our complex social relationships, said Jonathan Adler, who collaborates with Brewster and is a professor of psychology and researcher at Olin College of Engineering in Needham, Massachusetts. Telling a story about a traumatic experience can help people see some value in it.

Thinking about what you learned about yourself over the last two years might be a way to weave some meaning out of the pandemic, Adler said.

"COVID is a particularly large narrative challenge. This has been a very very disruptive experience, so the challenge of weaving some meaning into it is difficult," he said. "But it is a skill that humans are disposed to have." 

Ashokkumar warns that if it's too hard to write about your feelings or doesn't feel constructive, listen to that voice. 

"If you feel like you might push yourself over the edge or if it's too hard, maybe it is too hard (right now)," she said. "Maybe it means go to a therapist. You can't do this on your own – at least not yet."

Doing the work

Charon said her team at Columbia began organizing the weekly narrative medicine sessions two years ago because they thought the work might help others. "People kept coming back and coming back," she said.

Now, she and her colleagues, who also teach medical students and run a graduate program, are conducting research into the groups to better understand why. 

Jointly talking about an image or a piece of text, she said, can help people see perspectives other than their own, as well as tap into themselves. "You know more now about what you've perceived because you've heard what other people perceived," she said. "It really, really is a focus on the community-building and the realization that even though you don't agree with other people's perceptions, it expands your own to hear them."

Narrative medicine isn't therapy, Charon said, because it doesn't involve diagnoses or telling people what they can do to help themselves. Rather, it enables people to get perspective on their own experience.

"The magic here, the power is the reader, is having another consciousness get invited into yours," she said. "It's transformative."

Start your own storytelling practice

1. Start by thinking about the turning point in your story of trauma. Write about what changed in your life and why was it important.

2. Focus on writing specific scenes that capture who you were before and after this moment of change; include sensory details in your story (was it hot outside or freezing; what happened to you physically at this moment).

3. Write about what has been hardest. Don’t be afraid to include details related to your fears, physical discomfort, disappointment or family reactions 

4. Try to identify and write about something you learned from this experience or found to be positive along the way. Share a specific story that captures the best moment.

5. Are there any other important moments you've overlooked? Go back and revise your story in a way that pulls all these elements together into a cohesive narrative. Keep what you've written in a desk drawer or share it with someone you love, or your community.

Source: Dr. Annie Brewster and Rachel Zimmerman, authors of "The Healing Power of Storytelling"

Contact Karen Weintraub at kweintraub@usatoday.com.

Health and patient safety coverage at Paste BN is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.