Narrative and Illness: The Autobiographical Stories We Tell Matter

Humans love stories. From oral storytelling to novels to movies and television—we make sense of our world through narrative. Through stories, we seek to understand ourselves and be understood by others. Stories are especially important in identity construction. That is, we define ourselves in large part by the narrative we tell about who we are. As identity is profoundly changed by illness, how do we work with our narrative to reflect this shift?

Illness and narrative choices

For most people, illness is a “biographical disruption.” It’s an unexpected and often devastating event that blows up life as we’ve known it. We become acquainted with pain, fear, loneliness, and limitations. The people we were before illness could count on our bodies to work. The people we were before illness understood suffering as an abstract concept rather than as a lived experience. The people we were before illness had freedom in moving through the world that we took entirely for granted.

When illness strikes, we experience deep grief. We mourn for the things we have lost, especially our pre-illness identity. The grief is necessary, as we can never be who we once were. As we go through the grief process, we have to make a narrative decision: Is illness the end of our story, or is there a way our story can continue?

In their article “Volition as Narrative: Understanding Motivation in Chronic Illness,” Helfrich, Kielhofner, & Mattingly (1994) describe two people whose lives have been interrupted by serious illness. One individual continues to fight for his lifelong dream of being a reporter. He’s had to reconceptualize what this will look like. While he may never write for a prestigious national publication, he finds ways to continue reporting for smaller outlets, pivoting as needed. He says, “[P]eople who don’t get sick make [long-term] plans. Every plan that I’ve made has eventually been defeated and I’ve had to shift to another subplan.” But he keeps shifting, as many times as he needs to. He keeps writing more chapters of his life story.

The other case study in the article describes a woman who has not been able to make a meaningful life for herself post-illness. She says, “I feel like I got cheated out of my life.” In contrast to the first case study, her story ended with illness. No further chapters were written.

The narrative concept of “character”

One important narrative concept is “character.” How often do we read or watch a story and remark on the characters presented? While the events that occur in a story are certainly important, the intersection of plot with character is what makes stories so meaningful. In the article discussed above, for example, the reporter is a richly developed character. He is smart, determined, and resourceful. He is resilient. His sense of himself as a character with these traits enables him to meet the plot twist in his story with the strengths he believes himself to possess.

If I were working with the woman in the article, I’d want to get a sense of who she imagines herself to be as a character in her own life story. I’m guessing she may never have thought about herself in this way. I would ask her to tell me what she was like as a kid: What did she enjoy playing? Who did she enjoy playing with? I would ask her to tell me what she wanted for herself prior to illness and what she hopes for herself now. I would ask her to tell me what traits she values in herself and in others. I would ask her to flesh out for me who she is as a character in her own story. Undoubtedly, we would discover character traits we could build upon, strengths that might guide her as she imagines continuing her narration post-illness.

The narrative concept of “other characters”

Another important narrative concept is “other characters.” Stories typically involve characters interacting with other characters. In the article, the reporter mentions the support his mother gave him. By contrast, the woman speaks of an interaction with a doctor in which he told her that her illness would prevent her from ever finishing college. As in novels and films, other people are tremendously important in our life stories. In our own stories, who are the characters that support us, that help us along the way? Who are the characters who cut us down and make our lives feel smaller and harder? How can we invite in supportive characters while minimizing the damage done by non-supportive characters?

The narrative concept of listeners

“Narratives are created between people” (Ellis-Hill, Payne, & Ward, 2008). A novel has readers. A movie has watchers. A story has listeners. We create stories because we want to be seen and understood. We listen to stories because we want to see and understand. What is the story you want to tell about your life? Who do you want to listen?

Therapy as narration boot camp

If you’ve never thought about your life story, or if your life story needs a rewrite, therapy is a great place to do this work. Like an editor, therapists can often see elements of a story that the writer can’t. We can help you identify threads of meaning that run through your story (themes), and we can help you view your story in different ways (perspectives). Most importantly, we can help you with the chapter you are writing right now, in the present. What do you want this chapter to look like? Who can you imagine yourself to be in these unchosen circumstances? It’s your story: What are you going to write?

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