Most illness narratives lack a definite beginning or end; instead, they are conglomerations of family stories, heuristics, and societal images from long before a disease presents. Despite knowing this, I always return to that first moment of disclosure as the once upon a time conception of an illness narrative.
As someone with multiple chronic illnesses, I have had many disclosure experiences. While each illness has a different moment of conception, my disclosures all looked similar: stark white walls, a nervous patient in a cold hospital gown, and a stuttering physician trying to bridge the gap between empathy and education with hurried jargon. I am an easy patient to disclose to. I arrive with a notebook and pen, ask appropriate questions, and remain solution-focused, unemotional, stoic and informed. Despite this, the disclosures in my life have never been true or full; instead, there is something left unsaid by the medical team for me to discover later. Making me wonder, for those patients who might be more difficult to disclose to, "how much silence and censorship is in the room?" And is this ok?
This question informs my practice as an aspiring health psychologist but also as a writer, bringing me back to the idea of authorship. The language of disclosure—whether full or partial—implies authorship over the illness experience. By restricting the language for patients, are we controlling the authorship for ourselves? Or protecting them from oppressive discourse? Dana Gage’s conversational reflection on the power of narrative medicine titled My Year in Narrative Medicine (Fall 2011 Intima) emphasizes the influence of reflecting on the words we choose as both patients and clinicians. Narrative medicine, she contends, allows one to "write from the heart….We learn skills about writing and talking and telling. No censors. We take the story apart. Then put it back together in a new way."
Censorship provides control to the healer, allowing him or her to gradually nudge a new truth onto the patient, a trend that implies paternalism and hierarchy. But our patients are strong, even the ones who may not arrive with their own notebook, and providing an uncensored vocabulary to the illness experience may afford someone with more options for constructing and informing their own lexicon of pain. With reflection on patient narratives, Gage continues: "I eat slower. I talk slower. I even walk slower. No more scoping out the nearest bathroom, no more trying to store up sleep. I take more time for myself. And I’m not afraid to be myself."
Being less afraid of our privilege of knowledge may in turn impart authorship back to our patients. It may allow us to hand over our pens and provide our patients with a blank page for constructing their own "once upon a time moment, their own lived experience.
Kathryn A. Cantrell, MA, CCLS is a certified child life specialist and doctoral candidate in Counseling Psychology at the University of Massachusetts Boston. Read her piece, “Disclosure Day” in the Spring 2015 Intima.
© 2015 Intima: A Journal of Narrative Medicine