#certainpain Twitter Chat: 22 June 2017, 12-1pm (UK time)

  • Q1 Does chronic pain impact the pace of your life, and/or the ways in which you manage your time?
  • Q2 How does your current pace of life, living with chronic pain, compare to your previous pace of life, before the start of your chronic pain condition?
  • Q3 Have you encountered push-back or criticism from others because of the ways in which you manage your time?
  • Q4A Does the pace of life required by external factors – such as the policies of an employer or a school – interfere with the management of your chronic pain condition? In what ways? 
  • Q4B If yes, how have you dealt with this issue? 

Updated Info for 'Chronic Pain in the Middle Ages' Conference - Confirmed Speakers and SSHM Travel Bursaries

Conference Title: ‘“Why is my pain perpetual?” (Jer 15:18): Chronic Pain in the Middle Ages’
LocationInstitute of Advanced StudiesUniversity College London, London, UK
Date: Friday, 29 September 2017

 

Pain is a universal human experience. We have all hurt at some point, felt that inescapable sensory challenge to our physical equanimity, our health and well-being compromised. Typically, our agonies are fleeting. For some, however, suffering becomes an artefact of everyday living: our pain becomes ‘chronic’. Chronic pain is persistent, usually lasting for three months or more, does not respond well to analgesia, and does not improve after the usual healing period of any injury.

Following Elaine Scarry’s (1985) seminal work The Body in Pain, researchers from various humanities disciplines have productively studied pain as a physical phenomenon with wide-ranging emotional and socio-cultural effects. Medievalists have also analysed acute pain, elucidating a specifically medieval construction of physical distress. In almost all such scholarship – modern and medieval – chronic pain has been overlooked.

The new field of medieval disability studies has also neglected chronic pain as a primary object of study. Instead, disability scholars in the main focus on ‘visible’ and ‘mainstream’ disabilities, such as blindness, paralysis, and birth defects. Indeed, disability historian Beth Linker argued in 2013 that ‘[m]ore historical attention should be paid to the unhealthy disabled’, including those in chronic pain (‘On the Borderland’, 526). This conference seeks specifically to pay ‘historical attention’ to chronic pain in the medieval era. It will bring together researchers from across disciplines working on chronic pain, functioning as a collaborative space for medievalists to enter into much-needed conversations on this highly overlooked area of scholarship.

Relevant topics for this conference include:

  • Medieval conceptions and theories of chronic pain, as witnessed by scientific, medical, and theological works
  • Paradigms of chronic pain developed in modern scholarship – and what medievalists can learn from, and contribute to, them
  • Comparative analyses of chronic pain in religious versus secular narratives
  • Recognition or rejection of chronic pain as an affirmative subjective identity
  • Chronic pain and/as disability
  • The potential share-ability of pain in medieval narratives, such as texts which show an individual taking on the pain of another
  • The relationship between affect and the severity, understanding, and experience of pain
  • The manner in which gender impacts the experience, expression, and management of an individual’s chronic pain

Confirmed speakers:

  • Dr Katherine Harvey (Birkbeck, University of London, UK), ‘Chronic Pain and the Saintly Bishop in Medieval England’
  • Dr James McKinstry (Durham University, UK), ‘Headaches, Diseases, and Old Age: William Dunbar’s Diagnosis of Chronic Pain’
  • Dr Michele Moatt (National Trust and Lancaster University, UK), ‘Chronic Pain and Prophecy in the Twelfth-century Life of Aelred of Rievaulx
  • Catherine Coffey (Queen’s University, Belfast, Northern Ireland), ‘“Mit zwoelf tugenden stritet si wider das vleisch”: The Body Fighting the Flesh in Mechthild von Magdeburg’s Das fließende Licht der Gottheit
  • Katherine Briant (Fordham University, New York, USA), ‘Pain as a Theological Framework in Julian of Norwich’s Vision and Revelation
  • Dr Nicole Nyffenegger (Bern University, Switzerland), ‘Mary’s Perpetual Physical Pain: Affective Piety and “Doubling”’
  • Prof Wendy J Turner (Augusta University, Georgia, USA), ‘Mental Complications of Pain: Age and Violence in Medieval England’
  • Dr Bianca Frohne (University of Bremen, Germany), ‘Living With Pain: Constructions of a Corporeal Experience in Early and High Medieval Miracle Accounts’
  • Dr William Maclehose (University College London, UK), ‘A Locus for Healing: Saints’ Shrines and Representations of Chronic Pain’
  • Prof Esther Cohen (Hebrew University of Jerusalem), one of the foremost scholars on pain in the Middle Ages, will deliver the keynote address.

 

Members of the Society for the Social History of Medicine may apply for bursaries to facilitate attendance at this conference. Please see here for full details. 

The conference registration fee is £20. The fee is waived completely for concessions (students, the unwaged, retired scholars). Registration for the conference will open shortly, and be conducted via the UCL Online Shop, in the ‘Conferences and Events’ category.

If you have any queries, including access requirements, please do not hesitate to contact the organiser, Alicia Spencer-Hall (a.spencer-hall [at] ucl.ac.uk).

Logos for Society for the Social History of Medicine and the Institute of Advanced Studies at UCL.

Logos for Society for the Social History of Medicine and the Institute of Advanced Studies at UCL.

Bibliography: Chronic Pain Reading Group

Since last autumn, I've been running a Reading Group for the discussion of texts relevant to chronic pain, and sensory disorders more generally. (For details of the Reading Group, including how to join and our meeting schedule, see here.) Below, I've provided the bibliography for each session, which works as a primer for key texts in the area of chronic pain and allied issues, including disability and illness studies. I'll be updating this page on an ongoing basis, so watch this space for more readings.

Whenever possible, I've provided links to the readings online to maximise accessibility to the materials. Unfortunately, some pieces are either only available hardcopy or behind paywalls online. If you'd like access to readings as .pdfs, please email me to join the Reading Group, and I will add you to the email list to which I send out .pdfs of our selected readings in advance of our scheduled meet-ups. 

 

Reading Group 1 - Statistics and Logistics of Chronic Pain in the Medical Establishment

  • Brennan, Frank, Daniel B. Carr, and Michael Cousins, ‘Pain Management: A Fundamental Human Right’, Pain Medicine, 105.1 (2007), 205-21 (online here)
  • British Pain Society, and Dr Foster Research Ltd., ‘National Pain Audit Final Report’, British Pain Society, (2012) (online here)
  • Donaldson, Liam, 150 Years of the Annual Report of the Chief Medical Officer: On the State of Public Health 2008 (2008) (online here), pp. 1-5, 33-39
  • National Institute of Neurological Disorders and Stroke, Pain: Hope Through Research, NIH Publication No. 12406 (2014) (online here)
  • Tordoff, Kimberley, 'The Assessment of Chronic Pain’, in Fundamental Aspects of Pain Assessment and Management, ed. by Karina McGann (London, UK: Quay Books, 2007), pp. 51-62

 

Reading Group 2 - Illness Narratives, Talking Bodies, and the Fight for an Authentic Personal Story

  • Altman, Anna, ‘Every Body Goes Haywire’, n+1 (2016) (online here)
  • Ehrenreich, Barbara, Smile or Die: How Positive Thinking Fooled America and the World (London: Granta, 2009), pp. 15-44 (= ch.1 , 'Smile or Die: The Bright Side of Cancer') (Google books)
  • Eyler, Joshua, ‘The Grief of Pain’, Medium.com (2015) (online here)
  • Frank, Arthur W., The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995), pp. 1-25, 53-73 (Google books)
  • Frank, Arthur W., At the Will of the Body: Reflections on Illness (Boston: Houghton Mifflin, 1991), pp. 64-71, 108-114 (Google books)

 

Reading Group 3 - Working With, and Beyond, Elaine Scarry

  • Bustan, Smadar, ‘Voicing Pain and Suffering through Linguistic Agents: Nuancing Elaine Scarry’s View on the Inability to Express Pain’, Subjectivity, 9.4 (2016), 363-80 (paywalled online here)
  • Larocco, Steve, ‘Pain as Semiosomatic Force: The Disarticulation and Rearticulation of Subjectivity’, Subjectivity, 9.4 (2016), 343-62 (paywalled online here)
  • McIntyre, Michael, ‘Rethinking The Body in Pain’, Subjectivity, 9.4 (2016), 381-98 (paywalled online here)
  • Scarry, Elaine, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1985), pp. 3-23 (Google books)

 

Reading Group 4 - Chronic Illness and Disability

  • McRuer, Robert, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006), pp. 1-32 (Google books)
  • Patsavas, Alyson, ‘Recovering a Cripistemology of Pain: Leaky Bodies, Connective Tissue, and Feeling Discourse’, Journal of Literary & Cultural Disability Studies, 8.2 (2014), 203-18 (paywalled online here)
  • Souza, Valéria M., ‘Who’s Afraid of Chronic Illness as Disability? An Entire Field, Apparently.’, valeriamsouza.wordpress.com, (3 February 2014) (online here)
  • Wendell, Susan, ‘Unhealthy Disabled: Treating Chronic Illnesses as Disabilities’, Hypatia, 16.4 (2001), 17-33 (paywalled online here)

 

Reading Group 5: Pain, Chronic Illness, and the Perception of Time

  • Charmaz, Kathy, Good Days, Bad Days: The Self in Chronic Illness and Time (New Brunswick, NJ: Rutgers University Press, 1991), pp. 167-265, in particular pp. 169-95 (Google books)
  • Godden, Richard, ‘Getting Medieval in Real Time’, postmedieval, 2 (2011), 267–77 (paywalled online here)
  • Morris, David B., ‘Intractable Pain and the Perception of Time: Every Patient Is An Anecdote’, in Evidence-Based Chronic Pain Management, ed. by Cathy Stannard, Eija Kalso and Jane Ballantyne (Oxford: Blackwell, 2010), pp. 52-58 (paywalled online here; full-text on academia.edu)
  • St. Pierre, Joshua, ‘Distending Straight-Masculine Time: A Phenomenology of the Disabled Speaking Body’, Hypatia, 30.1 (2015), 49-65 (paywalled online here)
  • Toombs, S. Kay, ‘The Temporality of Illness: Four Levels of Experience’, Theoretical Medicine and Bioethics, 11.3 (1990), 227-41 (paywalled online here)

 

Reading Group 6: Gendered & Feminist Perspectives 

  • Hedva, Johanna, ‘Sick Woman Theory’, Mask Magazine, The Not Again Issue: Jan 2016 (online here
  • Jones, Cara E., ‘The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis’, Hypatia, 31.3 (2016), 554-71 (paywalled online here)
  • Pitts-Taylor, Victoria, ‘I Feel Your Pain: Embodied Knowledges and Situated Neurons’, Hypatia, 28.4 (2013), 852-69 (paywalled online here)
  • Price, Margaret, ‘The Bodymind Problem and the Possibilities of Pain’, Hypatia, 30.1 (2015), 268-84 (paywalled online here)
  • Wendell, Susan, ‘Toward a Feminist Theory of Disability’, Hypatia, 4.2 (1989), 104-24 (paywalled online here)

#certainpain: Anatomy of a Hashtag

Next week, I’ll be hosting the first in a series of monthly Twitter Chats to talk about what it’s like to have chronic pain, and to discuss ideas from my ongoing research with the chronic pain community. For the Chats, I’ve chosen the hashtag #certainpain. I agonised over picking a Chat hashtag. Selecting a hashtag felt very editorial, like I was implicitly directing or limiting the Chats’ content to a superficial pseudo-slogan: “The hashtag is X, so we can only talk about X.” This is directly at odds with my aims for the Chats themselves: to provide an open space for empathetic dialogue. Certainly, I will be facilitating the conversations, and providing stimulus for contributions. But, the point of the Chats is to hear the thoughts and opinions of those who deal with chronic pain about ideas, theories, and frameworks which crop up in academic scholarship, texts which so often de-emphasises – or at worst fail entirely to consider - the real bodies and real subjects they analytically dissect. Somewhat ironically, perhaps, as I progressed in my hashtag decisions, I was drawn back to the sensory reality of my own body as a means of centering my thoughts.

For those unfamiliar with Twitter Chats, a quick explanation is necessary. (For a run-down of Twitter Chat basics, see here and here.) In a Chat, all participants “mark” their responses by using a pre-defined hashtag to show that they are, in fact, taking part in the Chat. A pre-defined hashtag also allows others to more easily follow along with the Chat, and dip into the conversation if they feel like it. So, for example, by including #certainpain in a tweet, an individual is flagging the fact that they are contributing to this specific topic, and/or specific Chat in particular, and not just tweeting their thoughts more generally. The hashtag lets you filter out the substance of a Chat from the background noise of the rest of the myriad conversations happening on Twitter at any given moment. 

Guidance on choosing a Chat hashtag available online underscores that the hashtag should be:

  • Short

A tweet is limited to 140 characters. A long hashtag reduces the amount of characters left for participants to express themselves, and so is counter-productive to the aims of a Chat: to start a dialogue and hear from interested parties.

  • Unique

The point of a hashtag is to signpost a specific conversation, organised around a topic and often with a short series of questions to kick-off discussions. If your hashtag is already used for another Chat series, or in common usage on Twitter already, then your Chat is subsumed into a torrent of other tweets. So, for my purposes, #pain, #chronicpain, #painchat were all ineligible. You’re also advised to check that a hashtag hasn’t been used for obscene, or otherwise problematic, content. Not ideal, to say the least, if you accidentally associate your Chat with gonzo pornography or a Neo-Nazi meet-up thanks to a shared hashtag.

  • Relevant

A Chat hashtag must be easily identifiable as being related to the general topic under discussion. This means that Twitter users who may not necessarily be aware of the Chat’s existence or specific designated subject can, at a glance, get the gist of the content. So, for example, the hashtag #iasmedieval would be pretty useless. #iasmedieval flags that I’m based at the IAS (Institute of Advanced Studies at UCL), and that I’m focussing on medieval sources in my academic research project. All of this is true. But #iasmedieval is meaningless in the context of the Chats I’m hosting:

  1. “ias” is a mysterious acronym to those not in the know;
  2. “medieval” captures only my personal research agenda, and not the central thrust of the Chats – to open up discussions about the experiences of chronic pain today;
  3. the fact that pain is central to the Chats is completely hidden to those casually following along on Twitter.

 

So, why #certainpain? On a practical level, it fulfils the criteria set out above: short (enough), unique, and relevant. Tick, tick, tick. More than that, though, it highlights some of the significant issues at stake when we talk about chronic pain, encapsulated by the insertion of "certain". 

This is as good a place as any to “out” myself as a #spoonie (a descriptor derived from Spoon Theory), a member of the chronic pain community. Early on in my chronic-life, I was assigned Elaine Scarry’s 1985 book The Body in Pain to read for an undergraduate module on the not-overly-broad-at-all topic of “The Body”. It was a revelation. I was in the medical merry-go-round stage of post-diagnosis living: trying to establish a viable treatment plan for my fibromyalgia and going to countless appointments with doctors and practitioners of every stripe, or so it seemed. With a dark humour, I used to pointedly read The Body in Pain in waiting rooms. The sentence from the book that most struck me, and has entered my personal lexicon of useful maxims? “To have pain is to have certainty; to hear about pain is to have doubt” (p. 13; emphases in original). Right there in a two-decades-old monograph, Scarry captured the organising tenet of my life at that point. Every medical and institutional interaction – not to mention a fair few social interactions too – seemed to revolve around the unavoidable, insistent fact of my pain butting up against the inability of others to comprehend my pain, or even to believe in it fully.

I was "certain" about my pain - a trustworthy witness to and narrator of my body's sensory misfiring. The pain itself was a "certainty" - an inevitable, "reliable" part of my existence that stubbornly refused to go away. In these statements, I'm drawing on the Oxford English Dictionary's definition of the adjective "certain" in terms of sure-ness, authenticity, factual reality (see images below).

"certain" (I.1.a) in the Oxford English Dictionary (Online).

"certain" (I.1.a) in the Oxford English Dictionary (Online).

"certain" (I.2.a) in the Oxford English Dictionary (Online).

"certain" (I.2.a) in the Oxford English Dictionary (Online).

"certain" (I.2.b) in the Oxford English Dictionary (Online).

"certain" (I.2.b) in the Oxford English Dictionary (Online).

"certain" (I.3) in the Oxford English Dictionary (Online).

"certain" (I.3) in the Oxford English Dictionary (Online).

 

The OED provides other definitions of the word "certain" too. Take, for example this definition, which highlights the popular usage of "certain" to connote that which is "not polite or necessary further to define": 

"certain" (II.7.e) in the Oxford English Dictionary (Online).

"certain" (II.7.e) in the Oxford English Dictionary (Online).

Chronic pain is a "certain" kind of pain, the "bad" kind - the kind that just doesn't get better, or go away. To have chronic pain is to embark upon a chronic life, as the pain forcibly impacts almost all aspects of one's daily living, views on the world, even hopes and dreams. It is uncomfortable to consider, this "certain" kind of pain - about how one copes with perpetual pain. The specter of becoming afflicted oneself looms large in the mind of the nominally "healthy", however sublimated this anxiety may be. Better avoid the issue, and focus on happier things. It is not "polite" to discuss chronic pain, which has been neglected as an area of concentrated study even in academic scholarship. What's more, pain itself is fundamentally euphemistic: we cannot express fully in language our pain, really share how and in what why we hurt. And so, euphemisms and metaphors become central to the chronic-pain linguistic toolkit.

It is not that it is "not [...] necessary further to define" chronic pain - quite the opposite, much more research is needed in the area. But again, another nuance of the word "certain" comes into play: 

"certain" (II.7.a) in the Oxford English Dictionary (Online).

"certain" (II.7.a) in the Oxford English Dictionary (Online).

Chronic pain is an amorphous and vague descriptor. By this, I mean specifically that "chronic pain" is an umbrella term for potentially myriad different little-understood operations which then result in the similar, if not identical, effect of an unceasing pain response. (For discussion of the limits of our contemporary medical understanding of pain responses, and chronic pain, listen in particular to this Guardian Science podcast, featuring specialists Prof John Wood and Dr Natasha Curran. Prof. Wood notes at c. 6 minutes in that "pain perception itself is completely mysterious" currently.) So, chronic pain is a "certain" pain - bracketed off from acute pain, but a phenomenon (or bundle of phenomena) about which we actually know very little.  

In the above, my personal experience of chronic pain looms large as a lens through which I filter my analyses and my hypotheses. Yet, all pain is subjective. That is: no one can ever share another’s pain experience directly, be that in cases of acute or chronic pain. (On the differences between the two, see this brief primer by the Cleveland Clinic.) I have no idea if others' experience of pain mirrors my own. In other words, I experience only a "certain" kind of a "certain" kind of pain. And so, finally, that ineluctable specificity of experience underpins the #certainpain hashtag. We each live with our own specific pain, shaped and understood by our own context(s). A metaphorical picture of chronic pain can never be monotone or univocal. Rather, it is a polyphonic mosaic of hugely variable meanings, feelings, and experiences. It is my sincere hope that by entering into dialogue with one another, whether by participating in the #certainpain Twitter Chats or others similar endeavours online and in-person, we can share as best we can our divergent and necessarily specific experiences and thereby forward our understanding of "chronic pain" more generally.

*UPDATED* CfP: 'Chronic Pain in the Middle Ages' Conference, London (UK), 29 September 2017

Conference Title: ‘“Why is my pain perpetual?” (Jer 15:18): Chronic Pain in the Middle Ages’
Location: Institute of Advanced Studies, University College London, London, UK
Date: Friday, 29 September 2017

 

Jef Safi - 'through the median void breath resiliAnces . .' (Via Flickr; CC BY-NC-ND 2.0)

Jef Safi - 'through the median void breath resiliAnces . .' (Via FlickrCC BY-NC-ND 2.0)

Pain is a universal human experience. We have all hurt at some point, felt that inescapable sensory challenge to our physical equanimity, our health and well-being compromised. Typically, our agonies are fleeting. For some, however, suffering becomes an artefact of everyday living: our pain becomes ‘chronic’. Chronic pain is persistent, usually lasting for three months or more, does not respond well to analgesia, and does not improve after the usual healing period of any injury. 

Following Elaine Scarry’s (1985) seminal work The Body in Pain, researchers from various humanities disciplines have productively studied pain as a physical phenomenon with wide-ranging emotional and socio-cultural effects. Medievalists have also analysed acute pain, elucidating a specifically medieval construction of physical distress. In almost all such scholarship – modern and medieval – chronic pain has been overlooked. 

The new field of medieval disability studies has also neglected chronic pain as a primary object of study. Instead, disability scholars in the main focus on ‘visible’ and ‘mainstream’ disabilities, such as blindness, paralysis, and birth defects. Indeed, disability historian Beth Linker argued in 2013 that ‘[m]ore historical attention should be paid to the unhealthy disabled’, including those in chronic pain (‘On the Borderland’, 526). This conference seeks specifically to pay ‘historical attention’ to chronic pain in the medieval era. It will bring together researchers from across disciplines working on chronic pain, functioning as a collaborative space for medievalists to enter into much-needed conversations on this highly overlooked area of scholarship.

Prof Esther Cohen (Hebrew University of Jerusalem), one of the foremost scholars on pain in the Middle Ages, will deliver the keynote address at the conference.

Relevant topics for this conference include:

  • Medieval conceptions and theories of chronic pain, as witnessed by scientific, medical, and theological works
  • Paradigms of chronic pain developed in modern scholarship – and what medievalists can learn from, and contribute to, them
  • Comparative analyses of chronic pain in religious versus secular narratives
  • Recognition or rejection of chronic pain as an affirmative subjective identity
  • Chronic pain and/as disability
  • The potential share-ability of pain in medieval narratives, such as texts which show an individual taking on the pain of another
  • The relationship between affect and the severity, understanding, and experience of pain
  • The manner in which gender impacts the experience, expression, and management of an individual’s chronic pain

 

If you’re interested in speaking at the conference, please submit an abstract of 250-300 words and a brief bio to the organiser, Alicia Spencer-Hall (a.spencer-hall [at] ucl.ac.uk), by 1 March 2017. Please also stipulate your audio-visual requirements in your submission (e.g. projector, speakers, and so forth).

NB. Speakers will need to register for the conference in due course. The registration fee is £20. The fee is waived completely for concessions (students, the unwaged, retired scholars). 

If you have any queries, including access requirements, please do not hesitate to contact the organiser. 

This conference contributes to the ‘Sense and Sensation’ research strand at UCL’s Institute of Advanced Studies. This strand also comprises a Reading Group focused on chronic pain. To join the Reading Group, please email the organiser, Alicia Spencer-Hall (a.spencer-hall [at] ucl.ac.uk).

[Updated on 18/01/17, to reflect extended deadline for receipt of abstracts.]

Reading Group - 'Senses Gone Awry - Chronic Pain, Bodies, Texts, and Emotions'

Jef Safi - 'rhizome dis(re)construction . .' (Via Flickr; CC BY-NC-ND 2.0)

Jef Safi - 'rhizome dis(re)construction . .' (Via FlickrCC BY-NC-ND 2.0)

This bi-monthly Reading Group, based in UCL's Institute of Advanced Studies, provides a collaborative space for researchers from various disciplines to discuss theoretical understanding(s) of the senses in a state of disorder, drawing from well-established approaches and recent cutting-edge paradigms alike. Our chief focus will be on chronic pain, though works which deal with dysfunctional senses more generally will also be part of our corpus. Chronic pain is persistent, usually lasting for three months or more, does not respond well to analgesia, and does not improve after the usual healing period of any injury. The phenomenon, then, equates to sensory ‘misfiring’: the experiences of chronic-pain sufferers testify to the very real sensations provoked when normal neurological and biological functions ‘go wrong’, when the senses act seemingly according to their own ‘logic’.

What happens when the senses go awry, when sensory input no longer makes ‘sense’ to the human subject? How do those with seemingly malfunctioning senses deal with such phenomena? How does the medical establishment deal with such cases, which are often incredibly difficult to remedy? Should a ‘cure’ be the aim of medical interventions in all cases of sensory dysfunction? In what ways do senses that don’t make rational ‘sense’ challenge our ideas about the relationship(s) between the body, the mind, and our communities? These are some of the questions that will be under discussion in our meetings, guided by the selected texts under discussion.

Sessions will take place at 4-6pm on the following Thursdays during the academic year 2016-2017:

  • 24th November - please note change of location for this meeting - IAS Seminar Room 11
  • 26th January
  • 23rd March
  • 1st June
  • 27th July
  • 28th September

 

Sessions will take place in IAS Seminar Room 20, (First Floor, South Wing, Wilkins Building), with tea and coffee provided. All postgraduate students, post-docs, and staff are welcome.

Please contact Alicia Spencer-Hall to be added to the Reading Group e-mail list and receive .pdfs of the texts under discussion. Please also don’t hesitate to get in touch if you have any queries, including access requirements.

The Reading Group is intended to be an open, flexible, and collaborative forum. As such, suggestions for reading material(s) to be consulted in future sessions are enthusiastically welcomed! Texts which focus directly on chronic pain, or those which more broadly treat the topic of sensory dysfunction are equally eligible. If you would like to propose works for our discussion, or informally chair one of our meetings around a specific theme, please contact the organiser.

Update: Want to see what we've read so far? Check out the bibliography here.

Here's a poster about the Reading Group - feel free to share as you see fit!

Here's a poster about the Reading Group - feel free to share as you see fit!

Chronic Pain, Medieval and Modern

As of October 2016, I am embarking upon a new research project, entitled 'A Certain Suffering: Chronic Pain in Medieval France and England, c. 1100-c.1400'. My home for the next year is UCL's Institute of Advanced Studies, where I am one of two Junior Research Fellows interrogating the broader theme of 'Sense and Sensation'. Below, I sketch out the contours of the project, including some key areas of investigation I hope to probe. Over the next few months, I'll also be conducting a variety of research-led activities, including a Reading Group, Twitter chats with chronic pain sufferers, a medievalist conference, and a workshop for pain sufferers, academics, and medics. I've created this new 'Chronic Pain Project' section of the blog to corral all posts relating to this research, and I'll be posting details of all such events - so watch this space! 

Harald – 'Pain!' (Via Flickr; CC BY-SA 2.0)

Harald – 'Pain!' (Via Flickr; CC BY-SA 2.0)

Project Outline

Pain is a universal human experience. We have all hurt at some point, felt that inescapable sensory challenge to our physical equanimity, our health and well-being compromised. Typically, our agonies are fleeting. For some, however, suffering becomes an artefact of everyday living: our pain becomes ‘chronic’. Chronic pain is persistent, usually lasting for three months or more, does not respond well to analgesia, and does not improve after the usual healing period of any injury. Following Elaine Scarry’s (1985) seminal work The Body in Pain, researchers from various humanities disciplines have productively studied pain as a physical phenomenon with wide-ranging emotional and socio-cultural effects (e.g. Boddice 2014; Cohen et al 2012; Davies 2014; Morris 1991; Moscoso 2012). Medievalists have also analysed acute pain, elucidating a specifically medieval construction of physical distress. Pain could be viewed as a positive, even welcome, experience in the Middle Ages (see e.g. Cohen 1995, 2000, 2010; Easton 2002; Mills 2005; Mowbray, 2009). Equally, pain loomed large in spectacular medieval punishments that concretised mechanisms of social control (see e.g. Merback 1999). In almost all such scholarship – modern and medieval – chronic pain has been overlooked. My research remedies this oversight, focusing directly on depictions of chronic pain in medieval texts.

The project’s central research questions are: how is chronic pain depicted in medieval narratives? What stories do chronic pain sufferers tell to make their pain relatable, even shareable? What stories do those around the sufferer tell in order to understand the pain they witness? Are such narratives different in the medieval period, in comparison to those utilised in the modern period?  Pain affects all human subjects across time, resisting any easy classifications of ‘medieval’ and ‘modern’ by its nature as a universal physical experience. The ways in which we conceptualise and express the experiences of pain, however, are definitively linked to the cultural and social frameworks inhabited by a sufferer in a given era. This study, then, dissects universal and temporally-specific experiences of chronic pain.

The new field of medieval disability studies has also neglected chronic pain as a primary object of study. Instead, disability scholars in the main focus on ‘visible’ and ‘mainstream’ disabilities, such as blindness, paralysis, and birth defects (see, e.g. Eyler, 2010; Godden and Hsy 2013; Metzler 2006, 2013; Pearman 2010; Wheatley 2010). Indeed, disability historian Beth Linker argued in 2013 that ‘[m]ore historical attention should be paid to the unhealthy disabled’, including those in chronic pain (526). I emphatically concur. My project directly addresses chronic pain and those who suffer from it, thereby pushing scholarship beyond current limitations. In this research, I engage with modern and medieval theoretical models of incurable pain – its causes, effects, and management – to uncover points of contact and divergence. It will enable us to rethink chronic pain in medieval culture, and hence to re-evaluate current attitudes to the phenomenon more generally. Furthermore, recent research by psychologists and pain specialists has demonstrated the central role of emotions in the incidence and management of chronic pain. Emotions directly impact on physical sensations. For example, a low mood will make pain feel more severe (Tang et al 2008). My research disentangles the interactions between emotions and medieval chronic pain experiences, thereby also developing the new field of the history of emotions. 

Jef Safi - 'persistence of silliness and cynicism . .' (Via Flickr; CC BY-NC-ND 2.0)

Jef Safi - 'persistence of silliness and cynicism . .' (Via FlickrCC BY-NC-ND 2.0)

Beth Linker (2013) also seized upon an important facet of chronic pain: its capacity to destabilise the categories of illness, well-being, and disability (see also Brookoff 2005; Wendell 2001). Chronic pain is a ‘disease-less disease’, symptomatic of a ‘misfiring’ sensory response – there is no physical damage, yet the body still feels pain. Studying this phenomenon, then, forces us to consider questions of bodily and intellectual agency in the midst of physical discomfort. Can you ever feel ‘healthy’ when in chronic pain? Can you experience well-being whilst feeling that pain? Can that pain even be empowering? Such questions are particularly important to consider given the high incidence of chronic pain in the UK today. In 2008, the British Chief Medical Officer Sir Liam Donaldson estimated that 7.8 million Britons live with chronic pain (34). This number is ever increasing: each year over 5 million people develop chronic pain, but only two-thirds will recover. The National Pain Audit, conducted 2009-2012, demonstrated that chronic pain sufferers ‘endure a very low quality of life’ compared to sufferers of other conditions (British Pain Society and Dr Foster Research Ltd. 2012, 40). Moreover, 41% of the Audit’s participants felt that their local pain specialist did not help them in managing or understanding their pain (35). Greater understanding of chronic pain is desperately needed to improve individual experiences and broader medical practices.

Revealing the ways in which medieval sufferers attempt to share their pain narratively – and the kinds of narratives they are offered by social structures including medical practitioners, the Church, romance ideals and so forth – will better enable key stakeholders to listen to modern sufferers on their own terms, and ultimately permit all parties to talk more directly about improving patient care. Interrogating chronic pain allows us to speak to a wide variety of illnesses, as the phenomenon is often a symptomatic component of many diseases, including arthritis, IBS, and cancer.

Why turn to the Middle Ages to better understand modern chronic pain? I maintain that medieval frameworks for living with chronic pain have a lot to offer us. Specifically, in the Middle Ages, the experience of chronic pain was considered a valid – and potentially deeply positive – marker of social identity. Further, pain was represented as a shareable entity, quite literally travelling from body to body. For example, a medieval saint could take on the purgatorial sufferings of another individual to ‘work them off’ in their own body (Spencer-Hall 2015). How can we harness this approach of share-ability in the modern context to improve patients’ lives?

Pain is a fundamentally subjective and isolating experience; an individual cannot directly share in another’s physical pain, and pain itself often exceeds normal language. To transmit the essential nature of their experience to others, however, pain sufferers often turn to imaginative language and evocative narratives. Fictional texts capture these inventive articulations, showing the ways in which pain is linguistically constructed by and for sufferers, and the narrative frames of reference on offer for those in pain. With this framework, modern criticism that demonstrates the ways in which individuals suffering from illnesses deploy specific linguistic forms and narrative motifs will offer a potent heuristic with which to reconsider medieval depictions of chronic pain (see e.g. Frank 1991, 1995; Garro 1992; Jackson 1999). I do not intend to borrow anachronistically the contextual outcomes of modern theories. Instead, I borrow their questions, using the voices of modern sufferers that are embedded in such scholarship to talk back to, and with, medieval suffers. 

Jef Safi - 'in-between the penultimate leeway still saying . . oOops !' (Via Flickr; CC BY-NC-ND 2.0)

Jef Safi - 'in-between the penultimate leeway still saying . . oOops !' (Via Flickr; CC BY-NC-ND 2.0)

Against this broader project backdrop, I am currently concentrating on two issues in particular: gender and temporality. Studies of medieval pain in a religious context almost exclusively focus on cases of suffering in the lives of holy women. I hope to offer a welcome corrective to the holes in present criticism, by studying the phenomenon of chronic pain in biographies of medieval holy men. Do holy men suffer differently than holy women? Are men subject to different kinds of (mis)treatment because of their pain? To what extent does gender play a role in the medieval experience of pain, in a religious context? Or is gender secondary to religiosity - i.e. the accepted holiness of a sufferer - in terms of the experience of chronic pain? 

Modern scholarship of chronic pain brings to the fore the temporal effects of the experience of disability and chronic pain, which often leads to sufferers feeling ‘out of step’ with ‘normal’ time (Godden 2011; Hellström 1998; Hellström and Carlsson 1997; Morris 2010; Toombs 1990). The temporal ambiguities provoked by chronic pain lend additional analytical productivity to a methodology based on combining modern and medieval materials. For example, do chronic pain sufferers exist – at least narratively – on a separate timeline than ‘normal’ individuals? In this, then, do medieval and modern chronic pain patients actually have a significant shared temporal/existential stance? Does my methodological approach, bringing modern theories in touch with medieval theories, mirror the inherent structure of chronic pain sufferers as community across time?

 

References

Boddice, Rob, ed., Pain and Emotion in Modern History (Basingstoke, UK: Palgrave Macmillan, 2014)

British Pain Society, and Dr Foster Research Ltd., ‘National Pain Audit Final Report’, British Pain Society, (2012) <http://www.nationalpainaudit.org/media/files/NationalPainAudit-2012.pdf> [accessed 8 January 2016]

Brookoff, Daniel, ‘Chronic Pain as Disease: The Pathophysiology of Disordered Pain’, in Expert Guide to Pain Management, ed. by Bill H. McCarberg and Steven D. Passik (Philadelphia: American College of Physicians, 2005), pp. 1-34

Cohen, Esther, ‘The Animated Pain of the Body’, The American Historical Review, 105.1 (2000), 36-68

Cohen, Esther, The Modulated Scream: Pain in Late Medieval Culture (Chicago: University of Chicago Press, 2010)

Cohen, Esther, ‘Towards a History of European Physical Sensibility: Pain in the Later Middle Ages’, Science in Context, 8 (1995), 47-74

Cohen, Esther, Leona Toker, Manuela Consonni, and Otniel E. Dror, eds., Knowledge and Pain (Amsterdam and New York: Rodopi, 2012)

Davies, Jeremy, Bodily Pain in Romantic Literature (New York: Routledge, 2014)

Donaldson, Liam, ‘150 Years of the Annual Report of the Chief Medical Officer: On the State of Public Health 2008’, UK Government Web Archive, (2008) <http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_096231.pdf> [accessed 12 January 2016]

Easton, Martha, ‘Pain, Torture and Death in the Huntington Library Legenda aurea’, in Gender and Holiness: Men, Women, and Saints in Late Medieval Europe, ed. by Samantha J. E. Riches and Sarah Salih (London: Routledge, 2002), pp. 49-64

Eyler, Joshua, ed., Disability in the Middle Ages: Reconsiderations and Reverberations (Farnham: Ashgate, 2010)

Frank, Arthur W., At the Will of the Body: Reflections on Illness (Boston: Houghton Mifflin, 1991)

Frank, Arthur W., The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995)

Garro, Linda C., ‘Chronic Illness and the Construction of Narratives’, in Pain as Human Experience: An Anthropological Perspective, ed. by Mary-Jo DelVecchio Good, ‎Paul E. Brodwin, ‎Byron J. Good and Arthur Kleinman (Berkeley: University of California Press, 1992), pp. 100-37

Godden, Richard, ‘Getting Medieval in Real Time’, postmedieval, 2 (2011), 267–77

Godden, Richard, and Jonathan Hsy, ‘Analytical Survey: Encountering Disability in the Middle ages’, New Medieval Literatures, 15 (2013), 313-39

Hellström, Christina, ‘Subjective Time and Temporality in Conditions of Pain’ (PhD thesis, University of Gothenburg, 1998)

Hellström, Christina, and Sven G. Carlsson, ‘Busy with Pain: Disorganization in Subjective Time in Experimental Pain’, European Journal of Pain, 1.2 (1997), 133-39

Linker, Beth, ‘On the Borderland of Medical and Disability History: A Survey of the Fields’, Bulletin of the History of Medicine, 87.4 (2013), 499-535

Jackson, Jean A., Camp Pain: Talking with Chronic Pain Patients (Philadelphia: University of Pennsylvania Press, 1999)

Merback, Mitchell B., The Thief, the Cross, and the Wheel: Pain and the Spectacle of Punishment in Medieval and Renaissance Europe (London: Reaktion, 1999)

Metzler, Irina, Disability in Medieval Europe: Thinking about Physical Impairment during the High Middle Ages, c.1100-1400 (London: Routledge, 2006)

Metzler, Irina, A Social History of Disability in the Middle Ages: Cultural Considerations of Physical Impairment (London: Routledge, 2013)

Mills, Robert, Suspended Animation: Pain, Pleasure and Punishment in Medieval Culture (London: Reaktion, 2005)

Morris, David B., The Culture of Pain (Berkeley: University of California Press, 1991)

Morris, David B., ‘Intractable Pain and the Perception of Time: Every Patient Is An Anecdote’, in Evidence-Based Chronic Pain Management, ed. by Cathy Stannard, Eija Kalso and Jane Ballantyne (Oxford: Blackwell, 2010), pp. 52-58

Moscoso, Javier, Pain: A Cultural History (Basingstoke; New York: Palgrave Macmillan, 2012)

Mowbray, Donald, Pain and Suffering in Medieval Theology: Academic Debates at the University of Paris in the Thirteenth Century (Woodbridge, UK: Boydell and Brewer, 2009)

Pearman, Tory Vandeventer, Women and Disability in Medieval Literature (New York: Palgrave Macmillan, 2010)

Scarry, Elaine, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1985)

Spencer-Hall, Alicia, ‘Christ’s Suppurating Wounds: Leprosy in the Vita of Alice of Schaerbeek († 1250)’, in ‘His brest tobrosten’: Wounds and Wound Repair in Medieval Culture, ed. by Kelly DeVries and Larissa Tracy (Leiden: Brill, 2015), pp. 389-416

Tang, Nicole K.Y., Paul M. Salkovskis, Amy Hodges, Kelly J. Wright, Magdi Hanna, and Joan Hester, ‘Effects of Mood on Pain Responses and Pain Tolerance: An Experimental Study in Chronic Back Pain Patients’, Pain, 138 (2008), 392-401

Toombs, S. Kay, ‘The Temporality of Illness: Four Levels of Experience’, Theoretical Medicine, 11.3 (1990), 227-41

Wendell, Susan, ‘Unhealthy Disabled: Treating Chronic Illnesses as Disabilities’, Hypatia, 16.4 (2001), 17-33

Wheatley, Edward, Stumbling Blocks Before the Blind: Medieval Constructions of a Disability (Ann Arbor: University of Michigan Press, 2010)