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.
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.
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.
Organisations
Publications
Wasson S
(2021)
Waiting, strange: transplant recipient experience, medical time and queer/crip temporalities.
in Medical humanities
Wasson S
(2018)
Before narrative: episodic reading and representations of chronic pain.
in Medical humanities
Wasson, S.
(2020)
Book chapter.
| Title | Creative Manifesto: Translating Chronic Pain |
| Description | This Creative Manifesto outlines the crisis of chronic pain's widespread nature and invisibility, identifies the challenges to adequate representation of the crisis, and calls for 'flash' illness writing as an innovative response to the cultural lacunae. The Manifesto has been published on the project website alongside the Call for Creative Work, at http://wp.lancs.ac.uk/translatingpain/creative-manifesto/, and is itself a creative output of the project. It emerged from the collaborative work and discussions of the Creative Summit. |
| Type Of Art | Creative Writing |
| Year Produced | 2017 |
| Impact | In the few months since this has been issued, it has led to 41 new works of 'flash' illness writing, submitted to the website. |
| URL | http://wp.lancs.ac.uk/translatingpain/creative-manifesto/ |
| Title | Extended Online Anthology of flash writing about chronic pain |
| Description | As outlined in the grant proposal, the Research Network has continued to produce and develop an online database of 'flash'; illness writing, in which contributors experiment with short-form prose to capture the diversity of pain experience. The work is made available under Creative Commons BY-NC 4.0, to enable pain charities, members of the public and others to engage with and reproduce the work as widely as possible. As such, the website is designed to raise awareness of pain, communicate its complexities, and resist invisibility. To date the anthology includes 108 creative works from authors from a range of countries, including the UK, the USA, Canada, Slovenia, India, Belgium, Germany, Sweden, and Japan. |
| Type Of Art | Creative Writing |
| Year Produced | 2023 |
| Impact | Readers and participants have reported that reading and writing these short works has been very helpful for them, in handling the challenges of the invisibility of chronic pain. Comments have included: - 'The idea that moments of emotional doubt and distress like this one can be expressed as moments (rather than as part of a conclusive narrative) is helpful in both exploring and expressing those feelings' - 'Writing and doing art is a means for me to emotionally process having and invisible and painful chronic condition. Drawing comics has been a practice of building an empathetic and loving relationship with myself, and a way that allows me to own my narrative.' - 'Thank you for organising this project' - 'The project is a brilliant idea and really well done, and I'm enjoying reading the anthology.' - 'Breaking up the struggle and experience into 'bits' makes it somehow easier to write about the illness, or at least more manageable. I wish that I had written my entire thesis like this. Going forward, I will use this technique of working in fragments to help me delve more deeply into the bodily aspects of illness.' - 'To know there are researchers like you who are working hard to better understand the experience of being ill and in pain--that's a great thing for those of us who often feel misunderstood or marginalized.' - 'You have put together a fantastic project that is so meaningful and compassionate, one of which I am sure will help many people cope'; 'From my experience, this project really changed my life and my way of dealing with pain. The idea of speaking in fragments has given me a way to communicate which I never felt I had before it's made a huge difference to me personally'. The anthology has had international reach, including work from the UK, the USA, Canada, Germany, Belgium, Slovenia, India, Sweden, and Japan. I have received correspondence about it from people in the USA, Australia, Rwanda and Spain, such as a specialist children's nurse working with paediatric pain in Brisbane who emailed me to discuss her own practice. The online anthology was also included in Lancaster University's list demonstrating interdisciplinary engagement with health and wellbeing, in the development for the Health Innovation Campus |
| URL | http://wp.lancs.ac.uk/translatingpain/anthology/ |
| Title | Online Anthology: Chronic Pain, Moments and Fragments |
| Description | As outlined in the grant proposal, the Research Network has produced an online database of 'flash'; illness writing, in which contributors experiment with short-form prose to capture the diversity of pain experience. The work is made available under Creative Commons BY-NC 4.0, to enable pain charities, members of the public and others to engage with and reproduce the work as widely as possible. As such, the website is designed to raise awareness of pain, communicate its complexities, and resist invisibility. The database is hosted at http://wp.lancs.ac.uk/translatingpain/anthology/. The call for work went live in the first week of January 2018, and since that time 45 submissions have been received from the UK, the USA, Slovenia and Belgium. New work will continue to be added during the entire duration of the Research Networking project, and the PI intends to continue to develop it thereafter. |
| Type Of Art | Creative Writing |
| Year Produced | 2018 |
| Impact | The Anthology has been live for a month at time of writing. We have already received highly favourable commentary from the public in response to the database. Unsolicited email feedback has included: 'It is a fascinating and very worthy project and I look forward to reading the other entries'; 'I think this is a really important project, and I will definitely forward the links on social media. Thanks for creating it'; 'I had a look through your site before I submitted and there was some very moving work on there. I think this is a wonderful project'; 'The project looks wonderful'. 'I was very happy to find this project ... There can never be enough exposure on invisible illness, as it's forgotten about again, very quickly'; 'Thank you for this opportunity'. |
| URL | http://wp.lancs.ac.uk/translatingpain/anthology-collection/ |
| Description | This project met all its target goals: 1. to collaborate with pain patients and charities to identify how fragmentary, episode-focused writing can expand awareness of the complexities of chronic pain experience and pain science; 2. to produce a freely-available online database of innovative literary creative outputs, which translate challenging elements of pain experience and pain science; 3. to integrate findings from third-sector collaboration to inform academic work in the critical medical humanities; 4. to intervene in academic literary and medical humanities scholarship of pain and the inadequacies of traditional narrative representation, by means of a symposium, panel discussions, and a special journal issue; 5. and to identify how alternative literary representations of chronic pain may complicate the distinction between 'disability' and 'impairment' within disability studies. Several benefits to this form of writing emerged, as reported by the anthology's contributors and readers and workshop participants, including emotional and cognitive benefits ensuing from: a focus on moment rather than longitudinal life span; a short-form flash format enabling multiple voices to be juxtaposed and encountered sequentially, rather than the emphasis on a single individual's journey; and a platform specifically welcoming emotional breadth, which enabled writers to contribute work exploring, for example, both resilience and despair. This latter point is especially unusual and valuable since such emotions are often taboo in particular contexts of illness. In addition, the project produced academic publications which are helping to intervene in the way illness narration and pain writing are approached. |
| Exploitation Route | The project has shown that 'flash illness writing', as defned here (http://wp.lancs.ac.uk/translatingpain/creative-manifesto/ ) is a powerful tool which could be of value to others seeking representational forms for other forms of illness, too. |
| Sectors | Education,Healthcare |
| Description | We have received highly favourable commentary from the public in response to the online anthology. Comments have included: 'The project is a brilliant idea and really well done'; 'a great thing for those of us who often feel misunderstood or marginalized'; 'You have put together a fantastic project that is so meaningful and compassionate, one of which I am sure will help many people cope'; 'From my experience, this project really changed my life and my way of dealing with pain. The idea of speaking in fragments has given me a way to communicate which I never felt I had before it's made a huge difference to me personally'. This anthology has had international reach, including work from the UK, the USA, Canada, Germany, Belgium, Slovenia, India, Sweden, and Japan. The project also held led a creative writing workshop in Manchester for people living with chronic pain (2018) which drew a national audience, participants travelling from Scotland and other parts of England. It was promoted with the help of regional charities, including Fibromyalgia Action UK, Endometriosis UK and Ehlers-Danlos UK. Feedback included: ' absolutely useful'; 'Comforting', 'Reduces isolation' and 'A positive step forward in pain management'. In the years since the project ended in 2019, I have received correspondence about the anthology from people in the USA, Australia, Rwanda and Spain about it, such as a specialist children's nurse working with paediatric pain in Brisbane who emailed the PI to discuss her own practice. I have also been advised that the anthology website has influenced the conception abnd form of other projects in the critical medical humanities. it has been a privilege to see the impact of the writing unfold. |
| First Year Of Impact | 2018 |
| Sector | Education,Healthcare |
| Impact Types | Cultural,Societal |
| Description | Creative Summit: Writing Chronic Pain |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | We held the event 'Creative Summit: Writing Chronic Pain, Moments and Fragments' at Lancaster University on 21 October 2017. The event brought together 38 people living with chronic pain, creative writers, academics, medical practitioners and representatives from pain charities (Pain UK, A Way with Pain, and Pain Concern), to identify how fragmentary, episode-focused, 'flash' short-format writing can expand awareness of the complexities of chronic pain experience and pain science. Attendees came from the UK, Europe and America. The day included talks by members of each group, as well as a dramatic performance by specialist actors from the University of Manchester's specialist medical humanities drama practitioners led by Sarah Collins, as well as displays of artwork around chronic pain experience including fine art, textile art, and handmade books. The day also included workshop sessions and discussions around pain experience and the challenges it poses to representation. The social media tag was #translatingpain and typical attendee tweets included '@TranslatingPain is a hugely fantastic endeavour. I was thrilled to bits to have taken part in the Summit'. The event enabled three things: - Knowledge exchange between the PI and these diverse specialists to craft a Creative Manifesto to govern the network's subsequent impact activities. - Networking among the many people attending, which has already given rise to additional events and plans between pain charities, medical practitioners and people living with chronic pain. - In addition, the findings from the event are key strands of the next article to emerge from the Research Network, informing subsequent academic work in the critical medical humanities, by drawing on the findings from the Creative Summit to inform a paper for the Symposium and an ensuing article for the special journal issue. |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://wp.lancs.ac.uk/translatingpain/2017/07/05/writing-pain-creative-summit-saturday-21st-october-... |
| Description | Creative Writing Workshop: 'Flash' Creative Writing and Pain Experience |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | This was held in Manchester on 24 February 2018, led by Sara Wasson (PI) and Zoe Lambert and reached a national audience, with participants travelling from England and Scotland. 14 people attended; an additional person intended to come but due to severe pain was unable to attend due to pain on the day. It was promoted with the help of regional charities, including Fibromyalgia Action UK , Endometriosis UJ, Lyme Disease Action, and Ehlers-Danlos UK. Attendees self-identified as living with chronic pain. The goal of the event was to give people self-identifying as living with chronic pain an opportunity to experiment with short-form creative prose, 'flash' illness writing. Attendees were invited to submit work to the online database if they wished. Feedback was tremendously positive. Typical comments on the anonymous feedback forms at the close included: 'I found it absolutely useful'; 'Comforting'; 'get insight into how people cope; 'Reduces isolation'; 'A positive step forward in pain management'; 'Very helpful to look at senses instead of circumstances'; 'It gave me new ways to connect to my ideas'; 'Well thought out activities that allowed me to see my pain in ways that hadn't previously occurred to me'; 'Thoroughly enjoyable and enlightening. Thanks!'; 'Really interesting and thought provoking! I really enjoyed the opportunity to dig deeper into the emotive side of chronic pain and how I can communicate that better, and also help others to talk about their pain'; ' Very helpful. Well thought out activities'; 'Thoroughly enjoyable and enlightening. Thanks!'; 'I found it absolutly [sic] useful'; 'THANK YOU! FAB!'. In addition, we wished to approach this workshop as a pilot with a view to, in the future, developing further creative writing workshops for pain charity settings, which could ultimately be used as templates or DIY kits to enable charities nationally and internationally to run their own workshops for local groups. After the AHRC Research Network concludes, we will seek out further funding to develop this dimension even more, including workshops around short-form creative work including haiku, sequential art, and flash prose, as well as online group workshops using asynchronous communication. These initiatives could enable the benefits and satisfactions of the creative work to become available to a greater number of people, including those housebound by pain. |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://wp.lancs.ac.uk/translatingpain/workshop/ |
| Description | Representing Pain: Narrative & Fragments (Symposium) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | As well as academic papers, the event included a roundtable and audience participation, including collaboration with members of the public living with pain. The symposium explored challenges pain experience poses to traditional narrative representation, and the value of rethinking narrativity or embracing unconventional or fragmentary narrative forms. It was held at Lancaster University, Friday 17 August 2018, and was led by Sara Wasson (PI). Feedback was very positive. Typical comments included: 'I just wanted to say thank you so so much for today, it was absolutely wonderful. It was certainly one of (if not the) most academically (and in many ways emotionally) fruitful days I've spent since beginning my MA, and that's certainly a very high bar. I (and I'm sure everyone else, both in attendance, and involved with the project) sincerely appreciate all the hard work it's clear you've put in to making this project and event so accessible, and I know for my part I wouldn't have been able to attend without it. I'm leaving feeling invigorated, itching to put all these wonderful tools to use'. |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://wp.lancs.ac.uk/translatingpain/symposium/ |