Seeing how it feels

I will soon be speaking to an artist who is working on a project with people who suffer from chronic pain. The study will involve each individual patient having their own consultation recorded for research purposes, the results forming part of a larger study on facial pain. Because pain can be a distressing and isolating experience, it ought to come as no surprise that it can often be hard to describe in words. The intention therefore, is to create visual images of how each person feels in order to help others to understand it. The resulting visual images will represent their world, in which some of these people have been living long term. The aim is to work with patients to try to discover a visual language for their pain, using photographs to act as a springboard for dialogue between patient and doctor with the aim of improving patient care. For each patient, the study will involve a consultation with a clinician which will be video and audio recorded; the patient might be given an opportunity to refer to visual images as a tool during the consultation. This could involve an image resource of around fifty images of pain shown to the patient twenty minutes before consultation with each patient then being asked to look through the cards and select those which might have a particular resonance for them. Subsequent to this, the video and audio tapes from all of these separate consultations will be subjected to close analysis by researchers to evaluate whether having images of pain to refer to during a consultation makes any difference to the doctor - patient dialogue. The same team also worked on a similar collaborative project several years ago in the hope of creating work which could be cathartic and help people gain a sense of control over their pain, through making real what is invisible to others. In a previous series, photographs and accompanying narratives written by patients were found to share common themes, while at the same time offering unique perspectives. One patient wrote about how hard it was to explain pain to clincians so they could understand it, even though for each individual, gaining the understanding of their doctor was a vital step to getting them to believe in the existence of such pain. Creating visual representations could help others to believe its reality. Many of the photographs showed the visceral nature of pain, making it easy to see how it would be difficult to find words to describe how it feels. Other photographs were more subtle and illustrated the effects of living with pain through images of water running over the rim of a bath, showing how pain builds up until it overflows. Another participant wrote that pain was like an apple which was rotten from the inside, with a core as the centre of the pain coming through to affect the skin.

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