‘What is this thing called pain?’ Katharine Cheston reviews a new edited volume which sets out to explore this question.
Untreatable chronic pain, as Rita Charon tells us, ‘has become the signature disease of our time’ (Charon 2021: 33). According to a report published by the Institute of Medicine in 2011, chronic pain – defined as pain which lasts longer than twelve weeks – ‘affects at least 116 million American adults — more than the total affected by heart disease, cancer, and diabetes combined’. The British Pain Society describe this as a ‘silent epidemic’, reporting in 2016 that more than two fifths of the UK population live with chronic pain.
Deborah Padfield and Joanna M. Zakrzewska’s edited volume Encountering Pain: Hearing, seeing, speaking (2021) asks the undying question: ‘what is this thing called pain?’ (Padfield and Zakrzewska 2021: 6). The volume emerged from an international conference under the same title, which was held at UCL in July 2016. This conference was unique in that it brought together not just academics but also those who live with pain, those who care for them, and those who treat them. In the words of Rita Charon, the ‘experts in this landmark conference were the patients themselves’; medics and academics ‘were the humble students’ (Charon 2021: xxxv). As a result, between the Foreword by Rita Charon and the Afterword by Jonathan Wolff are a polyphony of voices – from academics to artists, experts-by-experience to clinicians – which, together, illuminate what it might mean to encounter ‘this thing called pain’.
The volume is divided into four parts: Hearing, Seeing, Speaking and The Future. The structure is interesting for its initial focus on hearing expressions of pain; for all the discussions in the medical humanities on pain’s (in)expressibility, we might expect ‘Speaking’ to come before ‘Hearing’. However, the fact that the editors felt the need to include in their introduction the assertion that this ‘volume starts from the premise that those living with chronic pain feel the pain they say they are feeling’ might go some way to elucidate the complexities of hearing expressions of pain (Padfield and Zakrzewska 2021: 2).
Rita Charon opens Part I with her chapter ‘How to listen for the talk of pain’. Charon argues that pain is ‘an intersubjective event’; witnessing the pain of others is a ‘reciprocal act […] with suffering on both sides’ (Charon 2021: 34-6). Careful editing sees this chapter followed by three vivid personal testimonies of chronic pain (by Liz Aldous, Ann Eastman, and Alison Glenn), enabling readers to put theory into practice as they witness pain via the page. Lived experience is not only expressed in prose but also in photographs, poetry (Chapter 4, ‘Pleurisy I-V’ by Rebecca Goss), and in interview format (Chapter 6, ‘Living with trigeminal neuralgia’ with Chandrakant Khoda), showcasing the diverse ways through which we can hear experiences of pain. In dialogue with these testimonies are art psychotherapist Helen Omand (Chapter 3) and dancer Anusha Subramanyam (Chapter 7), who ask us to consider more deeply the different ways of witnessing pain. Finally, Jens Foell’s exploration of the social contexts of pain encounters (Chapter 5) reminds us what is at stake when we witness pain – and of the need to hear expressions of pain with an open mind, and with kindness.
Part II, Seeing, deftly combines theoretical analyses with practice-based reflections in its exploration of how diverse media (including photography, art, social media, and online exhibitions) might help us to (better) see pain – and those who live with it. The chapters appear to form pairs or trios. The first pair, Chapters 8 and 9 (by Deobrah Padfield and Amanda C de C Williams, respectively), explores how photographs might permit more successful – and more empathetic – interactions in clinical and creative pain encounters. Bookended between academics Suzannah Biernoff (Chapter 10) and Minae Inahara (Chapter 12) is practicing artist Onya McCausland (Chapter 11); together they form a trio interrogating, in Biernoff’s words, art’s potential to ‘reimagine and resist’ pain. Moving beyond more traditional conceptions of ‘art’, the final chapters in this part – by Elena Gonzalez-Polledo and Jen Tarr (Chapter 13) and Susanne Main (Chapter 14) – consider how diverse media, such as social media and online exhibitions, might allow pain to be seen.
The contributors to Part III are concerned with what it means to speak of pain. Metaphors are a common theme across the first three chapters, present in Joanna Bourke’s discussion of the language of neuralgia (Chapter 15), Elena Semino’s analysis of language and images in pain consultations (Chapter 16) and Sharon Morris’ vivid and evocative pain poems, ‘The tree, spring and well’ (Chapter 17). Chapters 18 and 19 explore the challenges of pain and pain management in India, where the rich diversity in ethnicities, religious beliefs, and languages spoken can make speaking of pain all the more difficult. Abha Khetarpal and Satendra Singh share their personal testimonies in Chapter 19, and Senior Consultant Preeti Doshi offers a clinical perspective on the issues (Chapter 18). The final two chapters in this part, by Jennifer Patterson (Chapter 20) and Tom Chadwick (Chapter 21), challenge readers to consider how interdisciplinary methodologies might be critical to communicating pain.
The fourth and final part, The Future, could be summarised in two words: hope, and generosity. In chapter 22, Joanna M. Zakrzewska illuminates the potential use of visual images to communicate pain in clinical practice; these ‘PAIN CARDS’, she argues, could provide ‘a new way of communicating with and supporting patients with chronic pain’ (Zakrzewska 2021: 352). ‘Perspectives from neuroscience’ are provided by Kirsty Bannister and Anthony H. Dickenson in chapter 23, offering a fascinating summary of the latest neuroscientific research into pain, which concludes: ‘[t]he future holds promise.’ (Bannister and Dickenson 2021: 368). Finally, Giskin Day (Chapter 24) reflects on Encountering Pain – both this volume, and the conference which inspired it. Day writes of the need to treat those in pain with generosity – to offer, as Arthur Frank defines it, ‘an act of consolation’ – and to acknowledge that, even though we may not be able to relieve the pain of others, we can at least encounter it with them (Frank 2004: 2).
Padfield and Zakrzewska, editors of Encountering Pain, seem to have adopted a pragmatic approach in this edited volume, which they envisaged as ‘a tool for reducing disbelief, improving understanding’ (Padfield and Zakrzewska 2021: 15), as a ‘guide’ through the challenges of persistent pain (ibid: 2), and as a ‘gift to those who live with, treat, research or represent pain’ (ibid: 16). Such pragmatism is justified: readers are guided through personal, creative and clinical perspectives on pain, replete and resounding with the insights of many voices. Encountering Pain reveals what can be learned when we veer away from more concrete issues of definition – from pinning down exactly what ‘this thing called pain’ might be – and focus instead on the diverse and divergent ways in which we might encounter pain. Moreover, this volume could be said to be a guide to conducting successful interdisciplinary research, revealing the remarkable results that can be achieved when those with lived experience are held at the heart of research. The mélange of methodologies contained within these 400 pages stands, I believe, as an invitation to medical humanities scholars who, through methodological innovation that blurs once-rigid disciplinary boundaries, might encounter pain and illness more closely.
Katharine Cheston is a PhD student based at Durham University’s Institute for Medical Humanities and funded by the Wellcome Trust. She is on Twitter @kacheston.