The Story of the Wound that Cries Out: Using Narrative to Inform Healthcare Design in Research and Practice

Blog by Kari Nixon

“Trauma seems to be much more than a pathology, or the simple illness of a wounded psyche: it is always the story of a wound that cries out, that addresses us in the attempt to tell us of a reality or truth that is not otherwise available.”

–Cathy Caruth, Unclaimed Experience

Nixon, Kari - The Story of the Wound that Cries Out-Using Narrative to Inform Healthcare Design in Research and Practice
Matteo Badini. Free to use under the Unsplash License.

 

 

 

I was twenty-five when my father died, apparently of a rare form of encephalitic tuberculosis. Family members began dropping hints about his death that caused me to ask uncomfortable questions. I learned from them that multiple hospitalists had filed adult protective service claims against my mother in regard to his care and that my father had worried aloud he might be poisoned by my mother. This unsolicited information about him led me to suddenly ask far too many questions about myself, namely: had I really been sick my whole life?

The morphine always stands out in my memory: at fifteen years old and eighty pounds, I was prescribed eighty milligrams per day for two years. But there were many other opiates sprinkled in during that time: a dash here, a dash there, like fine seasonings on a narcotic steak. My mother regularly fed me hydrocodone on a spoon. She crushed it up into a fine, pink powder, and mixed it with rougher grains of white sugar. She’d hold it under my tongue gently, “to reach the bloodstream faster.” More questions arose. If the morphine wasn’t necessary in high school, what about the Ritalin when I was eight? The Prozac at seven? The nightly Dimetapp at six? As you might imagine, there weren’t answers capable of de-escalating this existential dilemma down to the “everyday puzzler” variety.

Ironically, although this was the first time in my life these questions about my past had ever occurred to me, I was working on a dissertation using literary analysis to investigate how disease impacts personal identity and interpersonal relationships. In fact, I had been finishing my chapter on tuberculosis when my dad purportedly died of the same condition. Nothing has ever made me reject Cartesian Dualism more than the awareness, in hindsight, that some part of me had always had questions about what disease does to a person’s identity, both individual and collective. My history bears witness to the unified “bodymind,” a concept I borrow from medical humanist Travis Lau to describe an anti-Cartesian perspective.

Long after my own discovery, I kept this revelation of my deeply personal reasons for my professional trajectory secret. After all, the definition of a professional is founded on another dualism: the separation of the professional from the personal. I would be less of a scholar, and more of a navel-gazer, if I came clean to my students about the real reasons I couldn’t stop writing about illness, embodiment, and identity…right? As I progressed in the field, becoming a tenure-track professor, and later a series editor of Lexington’s Health Communication Series, I saw a disciplinary shift in which feminist-driven autoethnographies gained greater traction as meaningful, necessary scholarship. I started speaking my history—into my teaching, into my daily, casual conversations, and into my writing. And when I did, a funny thing happened. I found others like me.

Since I began publicly knitting together my professional life and its personal roots, I have concluded that Munchausen Syndrome by Proxy (MSBP) is an invisible epidemic. Despite how well the plot device sells TV and books, very few people think they know anyone whom it has affected. It sells well as a fictional device because the entertainment industry portrays it as something so heinous that it must be statistically rare. In the clinical world, few doctors I have met have encountered a case, whether currently occurring or in the form of an adult struggling through its aftermath. And yet, nearly every one of the very few peer-reviewed articles on MSBP acknowledge that the condition is almost certainly under-diagnosed because cases go undetected.1 In fact, I’ve seen through my qualitative research and conversations that many adult survivors don’t even realize that they are survivors at all because gaslighting the victim is a fundamental part of this abuse. My disciplinary roots as a medical humanist trained in literary analysis has convinced me that humans need narrative structure to recognize personal trauma, particularly when excavating it from such gaslighting.

Like myself, the people I met had never questioned their childhood illnesses because they didn’t recognize their own experiences in the narratives of MSBP that were available to them in news and film. On some level, it seems obvious that narratives written about victims without consulting the victims risk seriously mishandling the subject matter. But if the group in question needs such narrative structure to recognize their own trauma and self-advocate to begin with, news and media won’t hear much push back. The result is a vicious cycle of alienation from oneself and from a potential survivor community, which creates a tacit confirmation of the same old narrative: MSBP is incredibly rare and always extreme in its nature. Without MSBP narratives from the few survivors who do learn what happened to them, there will never be the critical mass necessary to lobby for narrative change and convince directors and novelists to interview victims before presuming what our stories typically look like. Only then can more victims open a book, watch a movie, or turn on the news, and hear the cry of another wound like theirs, one that gives voice to their own secret wounds through narrative insight.

The current narrative absence affects research design too. There are experts in the field of MSBP, but not many. The Web of Science database shows just 48 published articles on the topic “Munchausen by proxy” in the last twelve years. For comparison, the term “trichotillomania,” or compulsive hair-pulling, reveals 872 articles published in the same period. It stands to reason that rare phenomena may be of less interest to aspiring graduate and medical students, and this dearth of scholarship leaves our healthcare landscape inadequately designed to serve those who do manage to survive MSBP abuse. Indeed, there are few evidence-based resources designed to help us deal with the adult sequelae of surviving a lifetime of being told we might die—largely because people think we don’t exist.2 This narrative absence thus contributes to an ongoing clinical and research design flaw, if a pure aporia may be called a design at all. Healthcare is designed without us in mind.

Even in my role as an expert in the ways that disease shapes personal identity, I couldn’t see this complex web of connectivity without narrative, until I decided to “be the wound that cries out.” My case serves as a valuable lesson for scholars and clinicians alike. We must embrace the rewards of designing healthcare autoethnographically and openly acknowledge the past in our present as well as the personal roots underlying our professional interests.

 

Kari Nixon is currently working on the Narrating Sustainability project in the Institute for Design at NTNU in Trondheim, Norway, on leave from her position as an assistant professor of English literature at Whitworth University in Spokane, Washington. Her work in the medical humanities covers disease and identity from the 1720s through today and has been published by Simon and Schuster, SUNY University Press, and in Disability Studies Quarterly, and the Journal for Medical Humanities.

 

References

[1] See, for instance, Onofrj, et al., 2021; Ayoub, et al., 2002; Hoffman and Koocher, 2019; Bursch, Emerson, Sanders, 2019.

[2] There is only one article on the topic of adult sequelae of MSBP survival, published by Judith Libow in 1994.

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