Translating Chronic Pain: A Critical and Creative Research Network

Lead Research Organisation: Lancaster University
Department Name: English and Creative Writing

Abstract

Chronic pain afflicts at least 7.8 million people in the UK and has a profound impact on their quality of life, relationships, employment, and society as a whole. Yet people living with chronic pain repeatedly describe feeling invisible and marginalised by medical practitioners, their loved ones and acquaintances, and members of the public. Part of this marginalisation stems from the way that certain kinds of patient stories are traditionally more celebrated than others, specifically, illness stories which have feature narrative coherence, patient agency and eventual closure.

This network aims to better represent chronic pain experience by disrupting existing expectations of illness memoir. Unlike traditional long-form illness narratives, our network will analyse and produce short-form work including poetry, poetry/prose hybrids, 'flash fiction', and visual/text hybrids such as graphic comic panels and photography/text combinations. Invoking the AHRC's themes 'Translating Cultures' and 'Science in Culture', this research network takes translation in its broadest sense, exploring the way that literature can communicate the experience of chronic pain sufferers, as well as bridging the divide between sufferers' worlds and biomedical culture.

The network will achieve these aims through activities including a Creative Summit bringing together pain patients, charities, creative writers, literary critics and medical humanities scholars for knowledge exchange and to collaborate in identifying ways in which innovative literary representations of pain may be of use to the sector; an Academic Symposium at which leading scholars in the field will assess and intervene in current literary scholarship around pain representation; a freely available online database of innovative short-form writing around chronic pain experience; and a Creative Writing Workshop with people living with chronic pain. Collaboration with the third sector is central to the network throughout.

The outputs of the research networks will be both academic and creative, with the academic outputs to include a special issue of the international journal Literature and Medicine, and podcast recordings of Symposium panel discussions, and the creative outputs to include an online database of short-form writing and a collaborative podcast with the charity Pain Concern, describing the project's findings and performing some of the creative work. This podcast will be broadcast in their established Airing Pain series, which reaches 4,000-7,000 subscribers, including people living with chronic pain, academics, and healthcare practitioners. Beyond the life of the grant, since the creative work will be informed from the start by stakeholder needs, the work will have a rich impact afterlife in arenas including pain education, patient support, carer support, and healthcare policy.

Planned Impact

Chronic pain affects nearly 28 million people in the UK alone and globally affects about 20% of the adult population. People living with chronic pain repeatedly report being marginalised and stigmatised by healthcare practitioners, their personal networks, and the wider public. The proposed Translating Chronic Pain network will counter the invisibility of chronic pain experience by generating a freely-available online database of 'flash' short-form creative writing to vividly convey how chronic pain impacts the lives of those enduring it, and by doing this achieve two ends: support pain sufferers by validating their diverse experience, and enhance awareness of the condition among healthcare practitioners, carers, and the wider public. As such, the beneficiaries will include people living with chronic pain, pain charities, carers, medical educators, people working to raise awareness of chronic pain in healthcare policy, and members of the public.

1. Supporting pain sufferers by counteracting stigma and silence

Our network will counter stigma and silence by supporting pain patients as both readers and writers. Pain sufferer and academic researcher L. Heshusius, for example, describes her relief at reading descriptions of other pain patients' experience: 'Finally, words that spoke to what I was going through.... I was not crazy. I was not exaggerating ... Coming up with concrete images that resemble what the chronic pain experience is crucial in the struggle to give voice to this insidious disease' (2009, pp. 6, 24). We will collaborate with pain patients and charities to produce new creative work portraying elided aspects of chronic pain experience. Together, we will draw on innovative short literary forms to effectively represent experience and to offer a platform for diverse patient voices.

2. Translating chronic pain experience: enhancing awareness among healthcare practitioners, carers and the public

The fragmentary form explored in this research network requires a focus on moments of experience without framing them within a comforting longer narrative arc. This episodic focus will ensure challenging elements of experience are not erased. Healthcare practitioners, family and the public can struggle to respect the validity of pain patient experience. Pain patient stories often lack clear causality or clear progression, and as such can be hard to recognise as a valid story; that narrative failure is part of the reason why healthcare practitioners can struggle to respect or support such sufferers. The brevity of the works produced by our network and their public availability will also make the resource immediately usable by a range of groups: pain charities can use the material in outreach and patient support, medical educators can use the material to enhance student engagement alongside clinical work, people working in healthcare policy can draw on the resource to give rich, humanising detail, and carers and members of the public can draw on the resource to help in understanding patient experience.

The network activities will begin with a 'Creative Summit' in which pain patient advocacy groups, pain educators, medical humanities scholars and creative writers come together to discuss how a freely available resource of 'flash' short-form writing can benefit their respective stakeholders. Using the insights from this event we will launch an open call for creative work for the freely-available online database, and we will run a creative workshop in Northwest England, publicised with the help of the regional group of Endometriosis UK and other local charities. The focus on stakeholder needs from the start is designed to ensure that the emerging creative work should have a rich impact afterlife in a range of arenas including pain education, patient support, carer support, and healthcare policy.

Publications

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