Illness is the night side of life,  a more onerous citizenship.  Everyone who is born holds dual citizenship,  in the kingdom of the well and in the kingdom of the sick. — Susan Sontag, Illness as Metaphor

Many people have experienced or are living with serious illnesses, like cancer, heart failure, organ transplant or other challenging health experiences.  Some of us may have experienced more than one serious medical condition.  In my teenage years, I became seriously ill.   During my recovery from neurosurgery, writing became my regular release. Notebooks and journals have been my companions ever since.  Many years later, an early-stage cancer diagnosis led me to research “expressive writing” and its emotional and physical health benefits.  Within months, I was motivated to initiate a writing group for cancer patients, and the workshops continued to expand.   Then, eight years after my cancer treatment, I was diagnosed with heart failure. My writing workshops did not cease but instead have since expanded to other patient groups, including those living with organ transplants and heart failure/cardiac conditions.

The patient…is, at first, simply a storyteller, a narrator of suffering–a traveller who has visited the kingdom of the ill. To relieve an illness, a patient must first begin to tell his story.—Siddartha Mukherjee, The Emperor of All Maladies

Now, two decades later, there are many different therapeutic writing groups widely available in many medical and community settings for patients or those living with hardship and traumatic life experiences.  The online format is now the predominant mode for access to programs, but a major advantage the online workshop attracts patients from other locations who may not enjoy the same wealth of health resources I do.  Whether in-person or online, the groups offer a safe and supportive place to share stories of illness, pain or suffering. 

When COVID forced us all inside, my writing groups continued, but online via ZOOM.  As much as I was grateful for being able to continue the programs, the ZOOM sessions presented a greater challenge for me than I’d anticipated.  Instead of a group of patients sitting together in a classroom, my computer screen was populated with the disembodied heads of the participants. (A few would choose anonymity online, opting for a blank screen with only their name visible). It wasn’t long before I realized the online format required a far greater amount of energy from me to facilitate the writing group vs in-person.  Despite the power and beauty of the writing some participants chose to read aloud, the computer screen diminished the sense of community usually experienced when we wrote together in person, most apparent in the greater reluctance for several of the group to share their writing with the group.    

Sharing the stories of our illness experiences is an important part of emotional healing.  Doing so helps to alleviate the feelings of loneliness and isolation that are often by-products of serious illness.  We need to share our stories and hear those of others because, as Anatole Broyard wrote,” Our stories are “antibodies against illness and pain” (Intoxicated by By Illness, 1989).

Writing and sharing our stories with others who have also experienced some of the struggles that we have can give us a fresh perspective or find commonalities that help us manage the loneliness and pain that accompanies living with illness, trauma or loss.  We are our stories.  When we share them with others who have also experienced hardship, we also affirm our uniqueness and discover what is most meaningful.   Sociologist Arthur Frank, a survivor of heart attack and cancer, described the importance of sharing our stories.  “I did not want my questions answered,” he said, “I wanted my experience shared” (At the Will of the Body 2002). 

We tell ourselves stories in order to live.  – Joan Didion

Sharing each other’s stories of illness or hardship helps to alleviate the loneliness and isolation many of us experience living with a life-threatening illness.   We know that loneliness is not good for our health.  Yet the reliance on online communication during and after COVID is a bit of an unwelcome conundrum in some ways. I think it can sometimes increase a sense of loneliness instead of diminishing it, which I sometimes experienced in the online workshops.  I wondered if the participants in my groups felt similarly.  While I was grateful we could continue the writing workshops online during the pandemic, the richness of the personal experience was diminished.  The online format inhibited the willingness of some participants to interact and share their writing to a far greater degree than the in-person meetings. (I thought about this recently after enrolling in an online art-related class and finding the online format so deadening, it only intensified my longing for face-to-face interaction.)

Stories…foster compassion, through the exchange of stories, we help heal each other’s spirits. –Patrice Vecchione, Writing and the Spiritual Life

Now, with the opportunity for an in-person workshop this month, I feel renewed excitement and energy.  The opportunity to lead another “Writing the Heart” workshop at the Ted Rogers Centre for Heart Research is something I am truly grateful for.  I think even the writing group leader needs an in-person boost from the community of others who share their stories of the illness experience through writing. 

After nourishment, shelter, and companionship, stories are the things we need most in the world. — Philip Pullman