Translating illness: bridging the gap between patient stories and medical jargon
What to do when words fail? Naimah reflects on an all-too-familiar disconnect between patients’ lived health experiences and their healthcare providers’ interpretation of their symptoms.
“It feels like a bruise.”
I blinked. She was deceptively alert and friendly, sitting up in her bed, telling me how she had ended up here. Acute pancreatitis. My jaw fell slack when I read her triglyceride level—a number beyond my comprehension. She was one of the most ill patients I had seen as a medical student new to the floors.
“Sorry, it feels like … what?” I asked.
“A bruise,” she said, gingerly poking her abdomen. Bruise was not in my vocabulary for pancreatitis.
“Is it aching, throbbing, burning, sharp, stabbing?” I offered. She shook her head.
“Okay,” I tried again. “If you had to describe it for me, aside from a bruise, tell me what it feels like.”
She paused for a moment, her brow furrowed. “It just feels like when you press on a bruise. I don’t really know how else to describe it.”
Silence. I scanned her expression. She scanned mine. We both laughed.
Understanding the precise nature of her pain was not important to my exam at that point. We already had her diagnosis. We had the imaging and the labs to confirm it. We identified the source of her pain and were able to keep her comfortable as it waxed and waned. Yet I remained unsettled by my inability to understand her description of her pain; it did not fit the textbook descriptions, and it certainly did not fit any of the descriptions I had ever heard from other patients.
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In clinic a few weeks later, I saw a patient with chronic pain in her legs. She told me the story of her pain, how it was constant and insufferable. She told me how it was beginning to consume her life. With each piece of information she gave me, I began to construct a broad list of diagnoses that I hoped that her words would help me narrow down.. “Can you describe to me what this pain feels like?” I asked.
“She sat quietly for a moment, scanning the beige walls of the exam room, searching for the right words. Then she shrugged, resigned.
“I don’t know how else to say it, it just feels … light.””
“It feels …” she paused, knitting her eyebrows together, “... light,” she said.
“Light …” I attempted to translate for myself, “like a numbness?” She shook her head. “Weakness?” I was determined to understand her, to validate what she felt. “Can you describe for me, what this lightness feels like?” I asked, earnestly. She sat quietly for a moment, scanning the beige walls of the exam room, searching for the right words. Then she shrugged, resigned.
“I don’t know how else to say it, it just feels … light.”
In these particular moments, I felt our separate vocabularies prevented us from truly being able to understand one another. These exchanges opened my eyes to the way we learn the language of illness as medical students. In our early years of training, we are taught the formal jargon for experiences of the human body, and begin to take the colloquial ‘crushing’, ‘shooting’, ‘tingling’ and bridge these descriptors to ‘angina’, ‘radiculopathy’, ‘neuropathy’. Then as we enter our clinical years, we start to file away patient stories into our mental archives, building a collection of metaphors for their pathologies: ‘An elephant on my chest’, ‘An icepick in my eye’, or ‘Worst headache of my life’. We slowly and often unknowingly become translators, puzzling together our patients’ psychology and physiology.
“Often though, words eluded direct translation. How could he convey the collective memory and visceral emotion of language from another world?”
As a child, my grandparents would teach me their mother tongue, Urdu. I tripped over the words, desperate to make them feel as familiar on my tongue as they were in my mind. Sometimes, my grandparents would use a word I had never heard before. “How do you say that in English?” I would ask, eager to understand. My grandfather would gaze into the distance, seeking the right words to capture the nuance. He would sometimes find it in metaphor. Often though, words eluded direct translation. How could he convey the collective memory and visceral emotion of language from another world? My desire to understand these words stemmed from a desire to connect with my grandparents. To understand their language was to understand them. I saw in my patients this same expression and desire for connection in their attempts to translate their experiences—to let me into the world in which they engaged with their illness.
“This collective language can isolate the individual from their lived experience of illness, and prevent us from fully understanding it. Understanding the impact and course of disease, then, requires breaking away from our social buzzwords and medical boxes.”
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Susan Sontag’s Illness as Metaphor explores the language society ascribes to disease. Through this language, she says, we can begin to understand the meanings we attach to illness. Cancer, she observes, is not just the mutation and proliferation of malignant cells; it is an invasion, a loss of autonomy, a struggle to reconquer the homeland that is one’s body. Cancer becomes a ‘battle’ or ‘fight’, labels that unconsciously put the onus on the individual to conquer their own mortality. In contrast, tuberculosis was associated with the Romantics and poets, with terms like ‘breathlessness’ (dyspnea), ‘rosy cheeks’ (hypoxia), and ‘frailty’ (cachexia) used to describe the main symptoms. This language, Sontag argues, represents our social and political interpretations of illness, which we project onto people experiencing disease through collectively created metaphors.
This collective language can isolate the individual from their lived experience of illness, and prevent us from fully understanding it. Understanding the impact and course of disease, then, requires breaking away from our social buzzwords and medical boxes. Extending the language we use to describe disease is equally—if not more—relevant in patients who speak a language other than our own. Even when trained medical translators are used, so much becomes lost in translation. Just as my grandfather struggled to convey the subtleties of his stories in English, so too have I seen patients provide lengthy descriptions of their symptoms in their native language, only to be distilled to a bare bones English translation. Through my training, I have found that the language patients use to describe their symptoms can reveal so much about the way they engage with their medical conditions, from the universality of the human experience to the personal relativity in each patient narrative. To listen, empathize, and seek to understand is the first step in bridging that gap.