Stories Are The Antibodies Against Illness


I often think about what the writer and patient Anatole Broyard said, “Stories are the antibodies against illness.”

It’s hard enough that a diagnosis comes along to threaten our lives—does it also have to threaten our life stories?  One of the things I heard many patients talk about was how their diagnosis resulted in what felt like an identity crisis.

Research tells us that the flood of emotions that comes with bad news doesn’t allow for reasoned responses. Yet I’ve known it to be otherwise.

One patient in particular comes to mind. I asked her, as I did all new patients after they met with their doctor before their first scheduled treatment, “Do you have any questions?”

Oftentimes, the response was immediate and universal: “I don’t even know what questions to ask.”

But hers was not.

“She asked, “ What is it you do— that a medical humanist does?”

I explained I was a writer by night and medical humanist by day and documented —in the patient’s own words—what they understood or misunderstood about their diagnosis, prognosis, treatment plan and if there were any questions they wished they had asked. I explained the doctor reviewed my note, which required his or her signature, before it could be filed in their chart. Over the years I witnessed doctors taking a pen from the pocket of their white coat noting, “They never told me that.”

”Why didn’t they ask me if I understood what they were telling me?”

I thought to myself, ‘Why didn’t you say something’ but I knew not to ask. My role was to help patients clarify what was misunderstood or unsaid.  The medical humanist note provided a vehicle to help facilitate communication—not answer medical questions and concerns.

What I learned is that in the process of becoming a patient –people want to be good patients and often tell the medical version of their story. They may not share how illness impacts the quality of their lives.

Illness calls for stories but telling doesn’t come easy nor does listening.  Without sharing the fuller story about how illness is affecting one’s life, our doctors cannot develop a plan of care that aligns with the needs of the person who is the patient. Thus, patients must help healthcare professionals understand their story, a life that has been interrupted by illness.

“Ah,” she said, “so that’s where you—a writer—comes in.”

(2) Comments

  1. Having recently become an involved witness in my 91 year-old mother-in-law’s slowly unfolding diagnosis, her surgery, time in rehab, and so on, I can attest to how difficult it is to find the courage to speak, to find a doctor who listens, to know what one doesn’t understand well enough to articulate it. If the patient can’t or won’t speak, who will or should of the family? The challenges are compounded in this case by the elusive origin of a malignancy; as a social worker commented, “she has a specialist for every organ.” Do the specialists talk to each other? Do all their offices return calls? Three guesses. If a PCP or a medical humanist can pull all this together, it seems like a minor miracle. The surprise to me is that things go as well (sometimes) as they do.

    Thank you, Celia.

  2. Thank you for talking about all this simply and compassionately. I was stuck on your point about a patient’s need to be willing to tell the fuller story. I think that the story is in chapters that evolve as the patient progresses through illness and treatment. No one can know their full story at the outset but they can know their story today. And tomorrow becomes another today and the story goes on. Drs need to understand that it’s not a one-time conversation.
    Again, thank you so much for all you do

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