Tag Archives: chronic pain

Chronic pain is not like other pain: or, a paper wot I gave last week.

Last week I went down to Brighton University for the Understanding Conflict and Critical Research Studies Groups’ conference, Re-engaging Elaine Scarry’s The Body in Pain, a 30th anniversary retrospective. I’d been really looking forward to it, as the programme looked awesome, with two keynotes speakers – Elaine Scarry and Joanna Bourke – whose writing has had a huge impact on my work.

I presented a paper called The Problem of Chronic Pain, in which I spoke about the early themes appearing in my research, from the interviews I have done so far with my participants. The paper started with a very short explanation of my research, including a brief summary of who my participants were, as a group – so I mentioned how they did and didn’t fit the picture of a “typical” BDSM practitioner (if there is such a thing!), and how there was a lot of difference between them all, in terms of impairments and practices. Then I picked out a few of the big themes that were starting to appear.

Firstly, I looked at language. In Elaine Scarry’s book, The Body in Pain, she writes about how pain is outside of language, and our expressions of pain (such as “ow”) are not words. For me, this means that being in pain is dehumanising – that, a person in pain is understood as not being fully human – while at the same time, we can see that rationalising and describing pain is understood as making us human – to be human, we have to be able to move past the animal expressions of pain in order to use metaphors like “burning” and “stinging” to describe what we feel. This is, of course, rooted in an ableist, normative understanding of what it is to be in pain when a person is able-bodied and able-minded.

At the same time, pain is something that is normally thought of as unwanted; we do not like being in pain, and people who are in pain are expected to seek help – because pain is assumed to result in suffering. This ableist idea of what suffering is means that pain becomes ontologically impossible, to borrow a phrase from Fiona Kumari Campbell (2009). At the same time, non-disabled people, and people who are not in pain, do not like seeing or hearing about people in pain. It can even be difficult for me – someone living with chronic pain – to hear about other people’s pain; I struggle to watch films with gory or realistic surgery scenes, for example.

This situation is difficult for people in chronic pain – in order to establish themselves as “proper” humans (and get help), they have to be able to talk about their pain, but they are pressured to remain silent because people don’t like hearing about pain. This quite often means people in chronic pain are not believed – especially women and people of colour. This was a conflict for a lot of my participants, and made them feel both dehumanised and dismissed. At the same time, they did find support in communities of other people with chronic pain, friends, and family members – although this could be difficult to establish.

The next big theme, again influenced by Scarry’s writing, is the problem of pain being understood in lots of academic writing as an attack on the phenomenological self (to put it more simply, pain affects how we experience the world and our sense of self), and experiences of pain result in the world being “broken” – and then remade through recovery, once the pain stops. However, Elaine Scarry was writing about acute pain, specifically pain in torture – and this is not the same thing as chronic pain. From talking to my participants, I think that chronic pain does not result in a permanently broken world – because my participants continue to have lives and experiences beyond their pain.

Chronic pain does not lead, precisely, to a constant cycle of unmaking and remaking of the world and our sense of self – because people who live with chronic pain are people, and not simply bodies, and they are people living with pain, rather than bodies in pain. This distinction seems a little trivial at first, but I think it might be rather more important – not just because it challenges how chronic pain is understood, but challenges normative conceptions of pain. This does not mean, however, that people who live with chronic pain do not have their identities changed, that their sense of self is not different to who they might have been without pain – but that they have worlds and selves that include but go beyond pain. I used the metaphor of a mug that has been broken and glued back together – it can be very hard to see the cracks (the pain), but the person who glued the mug back together knows the cracks are there, and sometimes those cracks might be really important, but sometimes it isn’t – and sometimes the mug is becomes a penholder after it is glued back together.

I might be taking this metaphor a bit far.

Several people said nice things about my paper, and made lots of helpful comments that will help me with the rest of this – including some films to watch and some more books to read. I have copies of the properly-referenced version of the paper, as well as an audio recording – if you would like either, please get in touch (while I work out how to put audio on here – I am having a fibromyalgia flare this week and my brain is soup).

Participants needed

I’m looking for 8 – 12 disabled people who use kinky play in their personal lives, to take part in some interviews and keep a bimonthly diary for me over a few months. This will form the research for my PhD.

I am looking at experiences of pain for people who experience chronic pain, but who also receive (or have received) pain as a part of their sex life – from spanking to needle play to flogging, as long as you play with pain, then it counts. What I’m exploring is how we talk about pain, what we mean by pain, and how we understand pain from a social standing. I’m hoping that, in looking at pain from a disability/impairment viewpoint alongside pain that people seek out, I will learn something new about pain, and be able to develop a theory.

If you think talking to me is something you’d like to do, please read on – please pass this on to your friends and acquaintances as well – you never know who might be interested. If you don’t want to, or can’t, be interviewed, you can still help – by passing this on, tweeting about it, or even forwarding it on to someone.

If you would like to participate – or would like to ask me any questions, please email me at: emma.sheppard@go.edgehill.ac.uk .


About You:

  • You must be 18 or over at the time of interview;
  • You experience chronic pain – the exact type, or reason, is not important (though we will talk about it);
  • You currently, or in the past, have consented to receiving pain as a part of sexual or erotic play (but you don’t have to identify as kinky or a BDSMer), and this is something you enjoy;
  • You’re happy to talk about your experiences of pain, sex, and sexuality;
  • You live in the UK.


The Interviews:

Interviews can be held over Skype, by email, or face-to-face – it’s about how you’re comfortable talking to me, and meeting your accessibility needs (as well as my own). Face to face interviews will be conducted in a location of the your choosing. If you need assistance, please feel free to bring along someone to support you – and let me know if you need any other support, such as an interpreter, or large print copies; I’m disabled myself, so I know how important it is to have what you need in the way of support.

Unfortunately I am not able to pay you for your time. There will almost certainly be cake though.

This is the big commitment – I’m going to want to interview you three times over about a year; for the first six months of that, I’m going to ask you to write a short diary entry twice a month. The first interview will be about an hour in length, and I’ll take a short life history, and then ask you some pretty open-ended questions (you can see those below). Then I’ll ask you to start keeping the diary entry – written, recorded, however you’d like – twice a month. After six months, we’ll talk again, this time for a couple of hours, and we’ll go over your diaries and things you said in the first interview. We’ll see where the conversation takes us – I’m interested in your experiences, so there’s no answer I want to hear.

Both interviews will be recorded, and I’ll then write them up, along with some notes and thoughts about your diaries. I’ll ask you to take a look at them, and in our final interview, I’ll ask you to reflect on what we’ve talked about. This is really important, because it gives you a space to tell me your thoughts and what you thought about taking part as well. Last but not least, you’ll be able to read over all three transcripts and my initial notes, and tell me if you’re happy with what I’ve got, which is when I go away and write my thesis.

Any information you give me will be made anonymous in any resulting publications – I’ll change your name, and try to keep any personal details as vague as possible.

Please get in touch if you have any questions at all! My email address is: emma.sheppard@go.edgehill.ac.uk , or you can get hold of me on twitter, @_ESheppard.

If you’d like to discuss this research with my supervisor, Paul Reynolds at Edge Hill University, he can be contacted at: paul.reynolds@edgehill.ac.uk


The Questions:

The basic questions will be the same for all participants, however, the direction of our conversation will be guided by your answers and what you want to talk about; I might have other questions, depending on what you say. You do not have to answer any question you are uncomfortable with, and I will stop or pause the interview should you wish.

The interview data and transcripts will be made anonymous in the final dissertation, and any other publication resulting from this work.

The following questions will be the initial “starter” questions, although some may not be relevant to you.

  • How do you describe your chronic pain?
  • How long have you been interested in BDSM? Was receiving pain a part of that from the beginning?
  • Do you use pain regularly in your play?
  • How does that pain feel?
  • Can you compare your chronic pain and your play pain?

The following biographical information will be collected as well:

  • Age, gender, sexual orientation, ethnicity
  • Impairment/disability
  • Age of impairment occurring/developing
  • Educational level
  • Where you’re from
  • Do you have/need a carer or personal assistant, if yes, is that person(s) a relative/friend, or an employee?


About Me

I’m a PhD student at Edge Hill University, and I currently live in London. I have fibromyalgia, which means I have chronic pain – among other things. I’m not currently active on the scene, although I am personally familiar with BDSM.

My background is in the social sciences, I’m interested in issues of gender, sexuality, and disability more generally – I’ve researched how queer and LBGT identities interact with disability in the past, and my interest in looking particularly at pain in what seems to be two very different situations grew out of that. I’m hoping that this research, as well as developing a bit of theory about experiencing pain, might help influence some research that can be put into more practical use for pain management – or at least change a few minds about how we think about pain.