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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).