Volume 2, Issue 1 (2026) Narrative Medicine

Editor’s Note

Nearly four decades ago, Susan Sontag noted that “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. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”¹ This issue of Narrative Medicine features stories about how patients and families cope with illness and injury in that ‘other place.’ We hope that readers will see themselves and others in these stories. Our authors explore the corollaries of both acute and chronic conditions, including anxiety, fear, pain, and loss. Their narratives also highlight the importance of family and friends, hope, hard work, and resilience in coping with the challenges they face on the night side of life.

Disease cannot be reduced to a simple diagnosis. It is a lived experience that shapes our interpersonal relationships, our work lives, and even our sense of self. As Meghan O’Rourke wrote in her essay on autoimmune disease in The New Yorker, “One of the hardest things about being chronically ill is that most people find what you’re going through to be incomprehensible - if they believe you are going through it.”² We hope readers will gain new appreciation for the psychological toll that illness imposes on patients and families. In this issue, several authors underscore how their chronic conditions and injuries affected their emotional health, sense of purpose, and daily routines. Illness and injury, in short, upend our norms and replace them with uncertainty.

As patients share their stories, they educate family members, friends, and their clinicians about the burdens they carry every day. In many cases, particularly with poorly understood or newly defined conditions, physicians don’t always believe the stories their patients tell. For example, as Jerome Groopman notes in his essay on the history of fibromyalgia, many doctors dismissed patients’ complaints about chronic fatigue, headaches, insomnia, and pain as a psychological condition, rather than a physiological one.³ Similar controversies appeared with new diagnoses such as chronic fatigue syndrome and post-traumatic stress disorder. Randy Shilts’ extraordinary chronicle of the first decade of the AIDS epidemic also highlights the vital role patients’ stories played in defining an emerging infectious disease.⁴ Activists shared their own stories and pressed public health officials to acknowledge and respond to their struggles at a time when public officials at both the federal and state level refused to talk about it.

Sometimes injury or illness strikes suddenly, without warning, leaving patients and their families reeling. In other cases, chronic or recurring conditions progress incrementally over months or years despite patients’ best efforts to manage them. The United States health care system is particularly well suited to treating patients with acute conditions that are of short duration and respond well to clearly defined treatments or therapies. The Emergency Medical Treatment and Active Labor Act of 1986 (EMTALA) requires hospitals to treat and stabilize any patients who present themselves for care at a hospital emergency department, guaranteeing access to basic lifesaving care for all patients. Patients often face significant barriers in managing chronic conditions such as diabetes, hypertension, or obesity, however, particularly individuals who lack health insurance or who live in medically underserved communities.

This issue also features a new contribution by Dr. Michael Stout, a thoughtful physician-author who is well-known to many Health Sciences students at Providence College. Dr. Stout generously gave his time to students in my courses on the Profession of Medicine during the 2023-24 academic year, sharing his decades of experience and insights as a practicing physician with students on numerous occasions. He continues to work part-time in an urgent care practice in Washington, DC, where he is also a clinical assistant professor of medicine at George Washington University. Dr. Stout is a regular contributor to Medicine@Brown and is currently working on a book manuscript that introduces readers to what it is like to practice medicine in a changing health care system. We look forward to sharing perspectives from other practicing clinicians with readers through our new Clinician’s Corner in future issues.

Beginning with our next issue, a student editorial board will review all submissions through a blind peer-reviewed process. Our student editors for the 2026-27 academic year are featured at the end of this issue.

Robert Hackey, PhD, Professor of Health Sciences Co-Editor, Narrative Medicine: Essays on Health and Care

References

1. Susan Sontag, “Illness as Metaphor.” New York Review of Books. January 26, 1978. Available online at Illness as Metaphor.
2. Meghan O’Rourke, “What’s Wrong with Me?” The New Yorker. August 19, 2013. Available online at What’s Wrong with Me?
3. Jerome Groopman, “Hurting All Over.” The New Yorker. November 6, 2000. Available online at Hurting All Over.
4. Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 1987.