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Paper short abstract:

This paper engages with chronic pain as a biological and socially embodied condition. Starting with insights from online communities where people with chronic pain re-negotiate agency, I will discuss how pain measurement relates to a biosocial understanding of pain as an existential condition.

Paper long abstract:

Chronic pain (CP) - pain that persists for longer than three months - is a complex condition that affects everyday life. Yet pain eludes clear-cut measurement and relies on a person’s symptom reporting and descriptions. In this paper, the experiential nature of pain is considered through examples from online communities for people with CP, and from a clinical point of view.

People with CP use these online platforms to seek understanding, make connections, and receive-and-offer support to others. One of the positive effects of these emerging communities is a sense of belonging and togetherness that counters the loneliness produced by diagnoses - which can be othering and stigmatising. Online communities offer a space to meet peers living within similar parameters or at least grappling with similar questions. With healthcare services oriented towards a biomedical model of health, support for biosocially complex conditions like chronic pain dwindles. Faced with prescriptive services and limited accessibility, online communities offer a space to replenish one’s sense of agency by generating knowledge together in a space outside the boundaries of mainstream ableism.

Within the clinic, from the 70s onwards there has been a proliferation of measures aiming to obtain an objective picture of pain while grappling with experiential subjectivity. I will argue that, learning from online communities, a focus on agency and community-building may help suture the gap between biological and social approaches to CP and consider alternative forms of care and wellbeing.