‘”A question of trust”: Medical humanities can help ease the pain’ – a contribution to our special edition collection of pain in the medical humanities, by Sandra G. Weems
In only the second semester of graduate school, my experience of chronic pain caused me to doubt everything: the value of my literary studies, the validity of my academic aspirations, even my own worth. Fortunately, pain steered me down an unexpected path leading to narrative medicine, toward a deeper appreciation for literature and reflective writing than I had ever known, and into certainty about the importance of teaching these topics in medical education.
Pain intruded quietly at first, inflaming only a single digit of my left hand. Rapidly, within weeks, pain had consumed my life by engulfing all the joints in my hands and feet like kindling. My most natural and vital movements became grave challenges: grasping a pen, holding an open book, rising from a chair, standing to lecture. Abject terror surpassed my increasing pain. I’d barely begun my graduate work, and now all of my career goals were threatened. Worse, as the pain continued to erupt, attacking and damaging knees, shoulders, elbows, jaw, I feared I might never regain mobility, never afford medical care, never hold any job again.
Facing physical disability was frightening; confronting the possible need for government ‘disability’ status was utterly horrifying. To avoid this convoluted ‘system’ of claims and denials was a primary health objective for me, as it is for many pain sufferers in the U.S. who seek above all else a return to normalcy.
Keith Wailoo delineates the complex debate swirling around pain and its treatment, revealing in his recent book ‘Pain: A Political History’ the dizzying number of decision-makers, past and present, who question the legitimacy of pain and ultimately affect patient care. In the 1950’s and ‘60s, the problem of pain presented ‘in a sense a question of trust’ (Wailoo 2014: 59) for legislators: a matter of discerning who might ‘be trusted to know and relieve another’s pain’ (2014: 59). Yet even now, while politicians, ‘lawyers, insurers, drug marketers, and scholars’ continue to gather ‘around pain, regarding it with puzzlement and wonder,’ they are ‘unable to see inside’ (2014: 53) it and their scepticism grows. Thus, as these experts worry ‘about the dangers or profits lurking within’ (2014: 53) pain, they increasingly situate the patient outside the debate and pressurise doctor-patient relationships. Most fail to realise how pain poses a question of trust for the sufferer. Patients want to trust their doctors—not profiteers, not the government—to treat their pain. To disappoint the trust is to compound the pain.
The invisible, subjective nature of pain makes establishing that trust difficult. As my pain went uncontrolled, what struck me most profoundly is the phenomenon Elaine Scarry so accurately articulates in ‘The Body in Pain’: that
‘for the person in pain, so incontestably and unnegotiably present is it that “having pain” may come to be thought of as the most vibrant example of what it is to “have certainty,” while for the other person it is so elusive that “hearing about pain” may exist as the primary model of what it is “to have doubt”’ (1985: 4).
The general practitioner from whom I first sought help shrugged as he read ‘rheumatoid arthritis’ in my family medical history. He continued to wiggle and bend my fingers casually, finally concluding ‘they don’t seem swollen to me.’ His doubt stunned me. I hadn’t the least notion of seeking powerful opioids or disability cheques, or even a note for missing class. I wanted to know what was wrong with me and, yes, I wanted relief. But to him, my pain was suspect. He was ‘unable to see inside’ it, and somehow his doubt superseded my certainty.
Today, whenever I stand before medical students in class, I see bright, healthy young men and women who have rarely, if ever, experienced severe illness or pain. I know that some measure of doubt is necessarily built into their curriculum and diagnostic training. But I know also that we can teach them to stay doubt awhile to listen to the patient who presents with pain—and with certainty about that pain. Our students do not yet know that the listener’s doubt can compound a person’s pain, both psychologically and physically. Active listening and empathy—‘bearing witness’, as Rita Charon puts its—can help abate pain instantly and, for the stricken patient, features a longer half-life than most medications. We can teach students to consider the sufferer’s experience of pain and thereby build mutual trust.
Medical humanities is uniquely positioned to effect profound positive change in the way pain is treated, by deepening physicians’ intersubjective skills with their patients, and by helping them understand and negotiate the intricacies of the political debates that may influence their work. I commend Wailoo’s remark to Melanie Thernstrom that we need to push ‘medical schools to embrace a more robust and sustained commitment to actually teaching doctors about pain as a widespread health problem’ (2014: np) one that ‘cuts across disease categories’ and manifests itself in countless, often bewildering ways. By teaching medical students to read, interpret, and treat each patient’s pain singularly, medical humanities helps return the experience of pain to the centre of such debates.
Such skills can be taught or heightened, for example, with literary texts, films, patient testimonies, and medical readers’ theatre performances. To teach reading and interpretive concepts requires that we help students understand the diagnostic value and humanistic importance of the patient’s story and subjectivity. The patient is not the object, not the pathophysiological disorder that students are training to identify, but a unique narrator with an exclusive, potentially insightful story to tell. Since we cannot see or measure pain objectively, doctors need narrative competence to ‘read between the lines’ of the story and gauge the reliability of each narrator. The narrative acts—speaking and listening—in the treatment room permit clear communication and empathic responses in both doctor and patient, and thus help answer all questions of trust.
This guest contribution was written by Sandra G. Weems (PhD) who is an Adjunct Lecturer at the University of Florida. Her interdisciplinary dissertation, The Poetics of Healing, explores the intuitive impulse to write as a way of coping with illness or trauma—the need to tell one’s story, as exemplified in selected works of literature. She has co-designed and co-taught a narrative medicine course for English graduate and medical students at UF. Her research interests include traumatology, narrative medicine, and the clinical uses of reflective writing.
Correspondence to Sandra G. Weems
Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press.
Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press.
Thomson-Deveaux, Amelia. The Politics of Pain. The American Prospect, 29 April 2014.
Wailoo, Keith. 2014. Pain: A political history. Baltimore: Johns Hopkins University Press.