Imagine the following scene. You’ve had some symptoms that worried you. You’ve gone to the doctor who agreed that a diagnostic work-up was in order. You’ve had an X-ray, maybe a scan, and some blood work run. The results are back, and you are in the doctor’s office, awaiting the verdict. On the one hand, you’re thinking “It’s probably nothing. I’ve just been overworked recently.” On the other, you are asking yourself, “Suppose it’s something serious?”
We have probably all rehearsed this kind of scene in our heads. What would we do/say/think/feel if the doctor were to say “I’m sorry to have to tell you this, but you have [name of dire diagnosis].” We might have a list of activities to tick off, people with whom to reconcile, places or things to do or see. Just getting a diagnosis ends up dividing as Suzanne Fleischman wrote: “a life into ‘before’ and ‘after,’ …[a division]… henceforth superimposed onto every rewrite of the individual’s life story.” She wrote this after her own diagnosis of what was to be a fatal leukemia.
Imagining this story is not hard, if we haven’t experienced or witnessed it before, because the diagnosis is so common a device in stories of all kinds. Diagnosis is, in itself, a story. It links together a set of phenomena in a usually linear manner, it generates an explanation, a plot line, and a denouement, in which a knotted bundle of threads gets untangled. It is a trope, or a motif. The stories of diagnosis are told in a particular tone, with an expectation of a particular kind of outcome. This is why we can imagine the diagnostic scene. We’ve seen in before in many other guises: a sombre newspaper report about a celebrity learning about an unexpected cancer, a book in which the protagonist must wrestle with the knowledge of his newly-announced disease, a film in which the main character watches her life wind down after learning she has an early-onset dementia. The picture accompanying this post barely needs a caption. We can recognize this scene.
Thinking about diagnosis as a story gives us opportunities. Any story can be retold, or reframed. There are many narrative templates, and not all are linked to devastating change. Importantly, thinking of diagnosis as a story, we have an opportunity to release ourselves from the dominating grip of diagnosis-as-verdict, diagnosis-as-moment-of-truth.
How about we move away from the contemporary tendency of narrative constructions, be they about diagnosis or something else, to focus on personal change. It is a tendency that my friend and novelist Damien Wilkins laments, as it “leaves out other ways of being in the world.” It’s not that transformation stories don’t have their place, but there are other ways of telling stories. Save the powerful about-turns for when they matter, he argues: “the notion of personal change – change which is improving – is both disreputable and unmoveable, tarnished and resolute, art’s cheapest trick and its most generous gift.” [i]
Narratives don’t always have to promise change. If we hearken back to the Greeks, the dominant narrative form focused on observing what happened to people as they endured trials. The trials were administered by fate, and rather than transforming the characters, they revealed them. They ride on, and through, the chaos of life, with only fate as immovable. In contrast to the change narrative (like the moment the doctor is going to tell us the name of some dreaded malady), it is not a moment where a power structure is revealed. The narrative affirms, rather than changes the character.
Diagnosis: Truths and Tales focuses on revealing the prevalence of the change narrative to which diagnosis clings, highlighting its transformative power, and suggesting a re-narration that will make the experience of illness something easier to bear.
[i] Damien Wilkins, “No Hugging, Some Learning: Writing and Personal Change,” in The Fuse Box: Essays on Writing from Victoria University’s International Institute of Modern Letters, ed. Emily Perkins and Chris Price (Wellington: Victoria University Press, 2017).
Annemarie Goldstein Jutel is Professor of Health at Victoria University of Wellington.
