Stories Are Never Neutral

I imagined story as a form of care. A patient speaks. A writer listens. Together, something difficult is shaped into language: a narrative, a poem, a record of what illness has done and what the person still wants the world to know.
But in my conversation with Dr. David Jones, I was reminded that stories are never neutral. They do not simply appear. They are mediated, edited, framed, anonymized, published, withheld, interpreted, and sometimes used. They can dignify. They can distort. They can expose. They can protect. They can change systems, and they can wound.
Dr. Jones, a physician-historian at Harvard, spoke about patient stories from the long view of history. Much of his own work involves people who have long since died, but he was careful to make a distinction I had not fully appreciated: being legally permitted to tell a story is not the same as being ethically right to tell it. The death of a patient may remove certain privacy protections, but it does not remove the writer’s responsibility.
He described working with older medical records and historical patient narratives, many written by physicians rather than patients themselves. In those sources, the patient’s voice comes mediated through someone else’s language, assumptions, prejudices, and power. In colonial contexts, those records may be weighed down by racist or pejorative descriptions. A historian can try to “read between the lines,” searching for traces of authentic experience behind the physician’s framing. But Dr. Jones called that effort both worthy and uncertain. Sometimes the source may be too burdened by the author’s baggage to use. Sometimes the story can be recovered only partially. Sometimes the ethical choice is not to tell it.

That idea struck me deeply because Prose for Patients also works in mediation. Many of our pieces are not patient-authored in the strict sense. They are volunteer-written and participant-reviewed. A patient, caregiver, artist, physician, or advocate shares a story, and someone else shapes it into prose or poetry. That model can be powerful because not everyone has the energy, time, language, or emotional clarity to write their own illness narrative. But it also means we must be honest: whenever one person writes another person’s story, there is power in the act of shaping.

The central question becomes: how do we make that act accountable?
For me, the answer begins with participant control. The story must belong to the person who lived it. They should decide what is written, what is removed, what remains private, what can be shared, and whether the final piece feels true. A beautiful piece is not automatically ethical. A moving poem can still misrepresent someone. A polished narrative can smooth over anger, uncertainty, or pain in ways that make the reader comfortable but make the participant disappear.
Dr. Jones also spoke about the changing standards around publishing patient stories. Older medical journals often published detailed case narratives with initials, partial photographs, or weak anonymization. A black bar over the eyes did not necessarily protect someone from being recognized. Today, journals vary widely. Some require explicit consent. Some require enough alteration that even the patient would not recognize themselves, an almost impossible standard for a meaningful personal narrative. Some encourage composite cases, which then raises a different question: where is the line between fact and fiction?

This matters for Prose for Patients because we are not only creating private reflections. We are thinking about advocacy, education, research, and publication. Each setting changes the ethical stakes. A story kept between patient and writer is different from a story published online. A story shared with a family is different from a story used in a classroom. A story placed in a medical record is different from a story submitted to a journal. The audience changes the responsibility.
One of the most striking parts of our conversation came when Dr. Jones described psychiatry case writing. If a resident wants to publish a case based on psychotherapy, consent is not a simple signature. Showing a patient what has been written about them can alter the therapeutic relationship itself. The next several months of therapy might become about the article, the clinician’s desire to write it, and the patient’s reaction to being represented. In other words, asking permission can itself become an intervention.

That is a humbling idea. Sometimes we imagine consent as a clean solution. But consent happens inside relationships. In medicine, those relationships may already carry dependence, vulnerability, gratitude, fear, or unequal authority. A patient may say yes because they trust the clinician. Or because they feel honored. Or because they do not want to disappoint someone. Ethical storytelling requires more than permission. It requires attention to context.
Dr. Jones’s historical work also shaped how he understood the brokenness of modern medicine. He spoke about how frustrating the American healthcare system can feel to students and residents who enter medicine with pride, only to find themselves inside a system not designed to provide the best care to the greatest number of people. His own training in history helped him see those failures not only as daily frustrations, but as the result of decisions, policies, and structures that can be studied. The broken parts of healthcare became objects of inquiry.

That lesson is important for patient storytelling. A patient story should not stop at empathy. If a story makes us feel sad but does not help us ask why the suffering occurred, what systems failed, or what could change, then the story risks becoming emotional consumption. The strongest stories do not only humanize patients; they reveal the structures around them.
Dr. Jones gave the example of work on race correction in medicine. Historical and scholarly critique did not immediately change practice on its own. But when journalism, public attention, and policy conversations took up that work, it helped shift the national discussion. Even then, change was fragile. Systems can resist. Progress can stall. But scholarship, writing, and advocacy can still alter what people are able to see.
That is one of the hopes I carry for Prose for Patients. A story can comfort one person. It can help a family understand. It can help a clinician listen differently. But it can also point outward. Rare disease stories can reveal diagnostic delay, disbelief, cost, stigma, and gaps in research. Stories from patients in underrepresented communities can show what clinical data alone cannot. Clinician stories can reveal moral distress and structural constraints. Advocacy begins when private suffering becomes visible without being exploited.

In speaking about his writing process, Dr. Jones described himself as inefficient, though what he described sounded less like inefficiency and more like rigorous abundance. He researches deeply, builds outlines, gathers far more material than the final piece can hold, and then revises down. A first draft may be many times longer than the finished work. Revision becomes a process of judgment: what matters most, what can be cut, what must not be repeated, what language might harm, and what evidence needs to remain visible.

That, too, feels relevant to patient storytelling. Writing is not only expression. It is selection. Every story leaves things out. Every poem compresses. Every narrative chooses a beginning, an ending, an image, a rhythm, a frame. The ethics of storytelling live partly in those choices.
Near the end of our conversation, Dr. Jones offered a caution for future physician-writers: be thoughtful about how you write about other people. That sounds simple, but it contains almost everything. Patients, physicians, communities, and institutions can all be harmed by careless representation. Sometimes critique is necessary. Sometimes writing will upset people. But the writer should be deliberate, prepared, and clear about why the piece needs to exist.
He also warned against scattering oneself across too many projects. Medical students, physicians, and writers often become interested in everything. But every project has an opportunity cost. Time spent on one idea is time not spent on another. The challenge is to choose deliberately without becoming paralyzed.

I left the conversation with a clearer sense of what Prose for Patients must become if it is to grow responsibly. It cannot simply be a platform for beautiful illness writing. It must be a practice of ethical representation. It must ask not only whether a story moves readers, but whether it remains faithful to the person who entrusted it to us. It must distinguish between stories by patients, stories with patients, and stories about patients. It must treat consent as ongoing, not transactional. It must allow participants to revise, refuse, and control what is shared. It must resist the temptation to make suffering too neat.

Most of all, it must remember that the story belongs first to the person who lived it.
For me, that is the central lesson from Dr. Jones: patient stories carry power because they are human, but they carry danger for the same reason. To write another person’s story is to enter a field of trust, memory, vulnerability, and interpretation. The task is not only to write well. It is to write carefully.
And sometimes, to know when not to write at all.