Paper short abstract

This paper asks how long-term pain is named as pediatric persistent pain and fibromyalgia in Finland, and how meaning, morality and imagined futures are at play in this dynamic. We show that naming long-term pain reveals a swirling threshold where disability and chronicity are complexly negotiated.

Paper long abstract

This paper attends to long-term pain as a swirling threshold of disability and chronicity. Drawing on research on fibromyalgia and persistent pediatric pain in Finland, we examine how pain is named—through particular words and diagnostic categories—and how meaning, morality, and imagined futures are at play in that naming. In pediatric pain clinics, the label of chronicity is actively resisted. Instead, clinicians emphasize children’s plasticity and capacity for recovery as justification for intensive efforts to manage pain before its entrenchment. Meanwhile, the diagnosis of juvenile fibromyalgia is categorically avoided, as fibro and its attendant ‘chronic pain personality’ (kipukroonikko) is cast as the most undesirable possible future. By contrast, those whom we call fibro-literate clinicians view a fibromyalgia diagnosis as having the potential to offer patients recognition and a language for their experiences. Yet they also acknowledge the risk that this diagnosis may invite dismissal by clinicians or insurance providers. To keep future possibilities open, patients may thus be told that fibromyalgia sensitizes them to pain, but be given a different formal diagnosis. Juxtaposing these cases, we show how the naming of long-term pain reveals a swirling threshold where disability and chronicity are complexly negotiated. In light of these findings, we ask: what kinds of activism, collaboration, and research could contribute to ensuring that the futures of people living with pain - whether young or old; with or without formal diagnosis - be less painful, and providing of the care required for life to be livable, despite pain that lingers?