Chronic pain affects around one in five people in the UK and Europe, and is associated with worse quality of life than almost any other disease. There is no objective test for chronic pain. It relies on people with pain being able to communicate their symptoms adequately and accurately to health professionals who in turn must be willing to listen and able to interpret these symptoms. While standard diagnostic tools rely on language to describe pain, there is widespread recognition that this is often inadequate. The difficulties in translating pain into language exist in sufferers’ everyday lives as well, where family and friends misunderstand the experience of living with chronic pain.
Communicating Chronic Pain: Interdisciplinary Strategies for Non-Textual Data ran from May 2013-September 2014. It aimed to examine non-textual aspects of pain experience. The first phase of the project looked at pain expressions on social media, particularly Tumblr, Flickr, and YouTube. In the second phase, we ran a series of arts workshops, led by artists and related professionals, with people with pain, carers and clinicians. These workshops explored drawing and sculpting, digital photography, sound and physical theatre as ways of creating expressions around chronic pain. We found the workshop space enabled new forms of communication around pain which emphasized its shareability rather than its isolation, moving away from binaries such as real/unreal or mind/body to ask questions like, ‘Do you see pain as inside or outside your body? Do you find it works better to tune into it or try to block it out? Is there a “you” that is separate from the pain?’