In the vast universe of all that has been written, writing about loss, illness, and death is probably second only to writing about intimacy, relationships, and longing. In the world of narrative medicine, the order is reversed. Patients are harnessing the power of writing, sharing, and telling stories of health and sickness using personal narratives to navigate illness, trauma, and grief. The experience of being ill is made less isolating by connecting with like-minded individuals and communities moving through life transitions and illness, those who provide sustenance on this difficult journey.
Health narratives, also known as illness narratives or medical narratives, are not merely stories patients tell about their experiences with illness, medical conditions, or health care-related events. These narratives also include a patient’s understanding and interpretation of their illness, the challenges they face, their coping strategies, and their overall experience with and passage through the health care system.
The essence of health narratives lies in their potential to provide a holistic view of a patient’s health, beyond just the clinical aspects. They encompass the emotional, psychological, social, and cultural dimensions of health, thus offering a more comprehensive understanding of a patient’s overall well-being.
In my experience, patients and physicians write narratives for similar reasons, especially if physicians have experienced the health system from both sides, i.e., as provider and patient. Here is a brief accounting of why patients write medical narratives:
1. Enhancing patient-provider communication. Health narratives can facilitate better communication between patients and health care providers by providing a platform for patients to express their experiences, concerns, and expectations. This can help practitioners to understand the patient’s perspective and provide more personalized care.
2. Patient empowerment. By sharing their stories, patients can feel a sense of control and empowerment in their health care journey. It can also encourage self-reflection and self-awareness, which can be beneficial for self-management of chronic conditions.
3. Education and awareness. Health narratives can serve as educational tools, providing insights into the lived experiences of individuals with specific health conditions. This can increase awareness and understanding among health care professionals, patients, and the general public.
4. Research and policy development. Researchers and policymakers can use health narratives to gain insights into the patient experience, which can inform the development of patient-centered care models, health policies, and health promotion strategies.
5. Therapeutic benefits. The process of recounting one’s health journey can have enormous therapeutic benefits, such as emotional catharsis and reduced stress. It can also help patients make sense of their experiences and find meaning in their illness. Studies actually show that patients who read poetry together experience decreased pain and symptoms of depression. Even if patients choose not to write about their health, or if sickness prevents them from writing, reading poetry may plant seeds for their writing when the time is ripe.
A few words about poems are in order. We can debate until the cows come home whether poetry should be considered a form of narrative. Technically, it isn’t. There are three major types of creative writing: fiction, creative nonfiction, and poetry. Each has its place in the literary annals, and students applying to graduate fine arts (MFA) schools are usually asked to choose a particular medium for specialized concentration. Narrative medicine is considered a subset of creative nonfiction. However, the genre borrows many of its tools from poetry – for example, the use of simile, metaphor, imagery, word choice and emotional expression.
There is no doubt in my mind that patients write more poems than physicians, although I do not know any statistic or research that can back me up. But that’s not the point. The point is that physicians should understand that if they encourage their patients to write about their illnesses – and they should encourage them to write – including sharing in their patients’ works, patients are likely to bring them poetry as well as narratives, and physicians should be somewhat knowledgeable about poetry and delight in reading their patients’ poems and give feedback.
Certified poetry therapist John Fox argues that “poem-making can be a way to remember we are flesh and blood.” Writing poems is a way to tap into our vulnerability when we are seriously ill, a vulnerability generally disregarded by modern health care systems preoccupied with technology. Fox criticizes – rightly so – any “medical system that displaces human contact and sense of community with an intense reliance on machines and drugs.” Writing poems under those conditions may allow patients to begin to live creatively rather than think about it, he observes.
I like the poem Fox chooses to introduce the third chapter of his book Poetic Medicine. The chapter is titled “Poetic Tools for Your Healing Journey,” and the poem is “The Remedies,” by Native American Joseph Bruchac. The opening and closing verses are as follows:
Half on the Earth, half in the heart,
the remedies for all the things
which grieve us wait for those who know
the words to use to find them.
Half on the Earth, half in the heart,
the remedies for all our pains
wait for the songs of healing.
Words are as important as medicine in the healing process. Physicians should never forget it.
Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia, PA. His forthcoming book is titled Every Story Counts: Exploring Contemporary Practice Through Narrative Medicine.