The Need to Tell, the Need to Be Heard: The Value of Illness Narrative in Healthcare Education and Practice - by Carol-Ann Farkas

Professor Carol-Ann Farkas is professor of English and Director of the Bachelor of Arts Program in Health Humanities at the Massachusetts College of Pharmacy and Health Sciences, Boston, USA.

I can confidently say that, regardless of our individual histories, and although you probably don’t remember it, every single one of us has the same illness narrative in common.

Once upon a time, when we were very little and only just learning to explore the world, we touched something hot or sharp or unfriendly, or we fell or jumped or were pushed, and suddenly, terrifyingly, there was PAIN, and maybe blood, and definitely frightened but indignant outrage. What—? Why—?!? Who can help make this better??

So we ran, howling and screaming, to the one who could make it better. That person – perhaps a mother or father, perhaps some other giver of care – tended to the physical injury with hugs, antiseptic and bandages, a kiss better…and they invited us to tell our story. “What happened?”

And we responded – with some words and much, much feeling – “This is what happened to ME, and I was trying to—, and I wanted—, and so then I —, and now it HURTS and it’s not FAIR!!”

And the giver of care listened to this story and responded – maybe with some lesson about the world that we have never forgotten (“that’s what happens when you…”), maybe with a moral that would hang over us well into adulthood (“this is why good little girls mustn’t…”), and certainly, also, with reassurance that we would be all right, that the pain would stop, that we were loved. “It’ll be ok – we’ll make it better.”

Illness narratives matter

In other words – we all understand what illness narratives are, and why they matter. We tell – we are compelled to tell – the stories of our illnesses and injuries for the simplest, most human reasons: the act of telling the story helps us impose order on otherwise-bewildering physical and emotional experiences; telling the story to someone, and receiving their response, helps us integrate and transform that experience – that plot – into meaning. As the study of trauma teaches us, we’ll cling desperately to even the most harmful stories over healing ones, so strong is that need to make meaning out of emotional or physical pain. Ideally though, the narrative process gives both narrator and audience the opportunity to co-construct a story whose meaning promotes wellness and comfort (Charon; Frank).

And this is why it’s so crucial that the clinical encounter includes time, and attention, for illness narratives (Charon). The suffering person will tell their story, and will ask? hope? for an empathetic response out of that lifelong, poignantly simple, need to have our pain recognised and tended to by someone who cares for us.

care givers are relegated to being mere providers

But so often, as modern health care is practiced, that need is refused. Our health care systems are designed to maximise the provision of treatment (in exchange for a certain amount of revenue); the health care professionals who chose that work because they wanted to be care givers are relegated to being mere providers, over-worked, harried, burned out, under-resourced. They want to hear our stories, they need and deserve to have their own stories be heard, but the conditions of the clinic or hospital make that human, empathetic connection difficult, if not impossible.

When we ask that our health care systems include more care, we’re given economic arguments about costs and priorities. The system can barely afford to treat; the system can certainly not afford “extras”, like allowing providers and patients more time to be present with one another, telling and listening.

We can argue that teaching providers how to think critically about illness narratives makes them better clinicians – that understanding the meaning-making function of stories helps them be more diagnostically observant, culturally sensitive, less discriminatory, and more interpersonally astute: they see the patient more accurately, leading to more effective treatment outcomes. We can also argue that allowing patients and providers to communicate with one another compassionately and respectfully is good for both parties; increased feelings of self-efficacy, respect, and empathy promote physical, social, and emotional well-being. (Charon; Belling; Greenhalgh & Hurwitz; Hudson-Jones; Marini).

valuing illness narratives

We – providers, health humanists – can make such arguments, and have done, and will continue to do. Ask any provider or patient how well those arguments have translated to real changes in clinical operations (answer: not very). Those of us who study illness narratives have long ago satisfied ourselves that telling stories about suffering matters, vitally, to everyone who has ever suffered, or who has ever tried to give care to relieve suffering.

Our own, private, stories of illness or injury motivate us to share what we learn with others through our research (every academic study, no matter how “evidence-based” and factual, always has some personal story lurking in its depths), in the hope that this time, this argument will be the one to somehow reach the decision-makers, that this time they will see what we see: it’s when we deny time and attention for illness narratives (connection, empathy) that we incur dreadful costs.

So we make the case for valuing illness narratives – creating, sharing, studying – and hope for change in the culture of medicine, a world where the innovation of new vaccines or surgeries can happen lightning fast, and yet where shifts in belief and habits take years. What can we do to keep that sluggish momentum, or maybe even push it along? That’s where the health humanists make an earnest plea to include illness narrative in every step of health care education, from the first year through professional training.

Learning to read and respect stories of illness

Learning to read and respect stories of illness – told through memoir and social media; fiction, comics, or drama; visual or performance art – is a skill that can be practiced in all disciplines and professions, and the more experience we have with stories, the greater our capacity for ethical and empathetic connection with others. And if our students learn the value of this connection early and often, they’ll find a way (I hope) to integrate it into their practice, on instinct, when they’re finally in the clinic or wards. When a patient comes to them in pain, needing to tell their story, needing to be heard, our students will be ready: “What happened? It’ll be ok – we’ll make it better.”