How Stories of Illness Help Us Heal

Thanksgiving is always a time of reflection for me, a time to contemplate how fortunate I have been and continue to be in both my personal and professional life. This year, my Thanksgiving reflections are particularly poignant. I am recovering from a severe infection that led to a week in the hospital and weeks of recovery at home. I was not sure I would be well enough to spend the holiday with family, and I am extremely grateful that I will be able to. But I continue to ponder how to make some kind of sense out of this experience, how to integrate this very difficult time into my understanding of who I am, my sense of meaning and purpose in my life.

Essentially, I am in the process of constructing what Arthur Frank has called “an illness narrative.” Like other forms of storytelling, illness narratives strive to create meaning from lived experience. Each of us creates an overall life story, a narrative of who we are, how we became this way, and who we want to be. Our life narrative weaves our experiences into meaningful sequences that convey our beliefs and values of how to live a life, how to be in the world with others, and how to create meaning and purpose for ourselves. Serious illness disrupts this process; we lose a sense of control and autonomy; we feel helpless and even hopeless in the face of debilitating health; we are dependent on others, and our care providers are often strangers. How do we make sense of these experiences, and how do we fit these jarring and draining experiences into the story of who we are? Arthur Franks talks about three types of illness narratives: chaos, return, and quest stories.

Chaos, Return, and Quest Stories

Chaos narratives strive for meaning but do not achieve it; they are often fragmented, focusing on difficult details, and we are unable to create any kind of coherence. Chaos narratives leave us questioning, doubting, and often ruminating and unable to fully process our illness experiences. These experiences remain burdensome, and we are unable to move past them. Illness becomes an unrepaired rupture in our life story.

Return narratives are stories of how one will get back to the person one was once the illness is remitted. These kinds of narratives create a sense that illness is a blip in one’s life story that must be overcome to return to “normal” life, the life one had before this devastation. Illness is not something to be processed or understood but simply something to “get over.”

In contrast, quest narratives perceive illness as a challenge that, if met, can lead to personal growth and increased self-understanding. Illness, like any other experience that challenges our sense of who we are, is a learning experience, a chance to discover something about ourselves. Perhaps something positive, like inner strength and resilience, but perhaps something humbling as well, a sense of understanding that the universe is not under our control, that we must be flexible and sometimes adapt to circumstances that are beyond us.

Caregiving Environments

Like all other narratives of self, illness narratives are constructed within the social interactions and physical environments in which our stories unfold. I was lucky that I had excellent health care and compassionate care providers, as well as amazing support from family and friends. Illness narratives are constructed in caregiving environments by those who are interacting with and trying to understand the patient in ways that will be beneficial for the outcome. Care providers who impose their own narratives on their patients do themselves and their patients a disservice, not allowing the full humanity of both patients and caregivers to emerge.

Based on the groundbreaking work on narrative medicine by Rita Charon, current medical training emphasizes the need for both patients and caregivers to fully explore their personal and overlapping narratives of health and illness to provide a more compassionate caregiving environment. As beautifully articulated by DasGupta, “Narrative humility acknowledges that our patients' stories are not objects that we can comprehend or master, but rather dynamic entities that we can approach and engage with, while simultaneously remaining open to their ambiguity and contradiction.”

I am still struggling with my own illness narrative. I think I began with a “return” narrative, that I will get over this illness and be the person I was before. But as I continue to process what happened, I think I may be moving to a quest narrative. As I have told my story to and with my many caregivers over the past several weeks, as well as sharing with friends and family, I am beginning to construct a new narrative of searching, hopefully for a story of strength, yet at the same time one that acknowledges my limitations, ultimately my mortality. But this narrative also provides hope. And my story certainly contains ambiguity and contradiction.

We strive for coherence in our personal narratives, and coherence is demonstrably good for us. When we tell personal narratives that are coherent, we display higher self-esteem and a higher sense of meaning and purpose in life. But perhaps not all narratives are created equal. Perhaps illness narratives, narratives focused on disruption and disempowerment, provide a different way of understanding one's self, a self that is often not autonomous. And, importantly, not all illness narratives end with recovery. Many people live with chronic and even terminal illnesses. Creating meaning in these situations seems especially challenging. How do we construct meaning under these circumstances?

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This Thanksgiving, I am reflecting on what it means to allow myself to understand that there are times when things might happen that I cannot quite understand or control. I am learning how to live with ambiguity about the future, which is both unnerving and also empowering. What will be, will be. And I am thankful. This Thanksgiving, give a moment to your own vulnerabilities. In the midst of what we are thankful for, let us also be grateful for our ability to confront ambiguity and to embrace an uncertain future.