Chronic Pain in the UK Today: Medical, Academic, and Political Perspectives

I blogged previously about the public workshop on chronic pain I've been organising. I can happily report that the day went very well, with exciting and insightful presentations and lots of productive - and often provocative - discussions. To maintain anonymity of our attendees though, we didn't film the Open Forum with which we ended the day. Below you'll find several ways to access the main content of the workshop:

  • the programme (with speaker biographies)
  • the recorded livestream (on YouTube)
  • a full transcript of the livestream video
  • a Storify of all relevant tweets from the day.

Please feel free to share a link to this post widely, so as to disseminate the workshop findings as far and wide as possible!

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Edited 19/12/17: Due to the impending demise of Storify, I've switched out the Storified content to a Wakelet collection.

#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? 

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Edited 19/12/17: Due to the impending demise of Storify, I've switched out the Storified content to a Wakelet collection.

#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.