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Paper short abstract

This presentation explores pacing as a material-semiotic practice of knowing and caring, involving interrelations among suffering bodies, technologies, and medical institutions.

Paper long abstract

‘Pacing’ is framed within biomedical discourse as a technique to self-manage chronic pain and fatigue by balancing periods of rest and activity. It is considered the primary means of managing contested diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, for which there is a paucity of resources for knowledge and care. People with ME/CFS and fibromyalgia are encouraged to avoid doing too much or too little, often by quantifying and monitoring their activities. Pacing is also a way for people to know their illness: to navigate uncertainty in everyday life; visualise their suffering; and communicate its legitimacy to others, including medical professionals and state actors. However, pacing is far from the individual practice that it is often imagined as; it plays out at the intersections between suffering bodies, technologies of care/surveillance, and medical institutions. In this presentation, I explore pacing as a sociotechnical practice of knowing and caring. Drawing from ethnographic research in the United Kingdom, I follow the practice of pacing through the lab, the clinic, into the everyday lives of people with ME/CFS and fibromyalgia, and onto social media. Reframing pacing as a material-semiotic practice opens up its potential to resist, rather than reinforce, capitalist imperatives to maximise productivity and health. The epistemic and embodied resilience that pacing aspires to requires a future where infrastructures, institutions and economies slow down. Only then will bodies that are disabled, pained and fatigued be able to move at the pace they need to live.