Sensing pain: Embodied knowledge in endometriosis

Abstract

The article explores how sensations of pain are turned into embodied knowledge in endometriosis, a chronic gynaecological illness characterized by persistent, possibly paralysing pain. While previous studies have shown how people with endometriosis struggle to achieve accurate diagnosis and effective treatment, we examine the ways in which some of these difficulties are rooted in the complexities of embodied experiences of endometriosis pain and the challenges of translating the sensed patterns and shifts in pain into a language acknowledged within a clinical setting. Building on a phenomenologically inspired approach to chronic pain and drawing on interviews with people diagnosed with endometriosis in Finland, we examine how our interlocutors use their embodied sensations of pain to adapt to the evolving biomedical and lived surroundings in which their pain is evaluated and managed. The analysis shows how living with chronic pain involves constantly attuning to the multitude of symptoms as well as developing personal strategies of communicating sensations of pain to gain medical recognition and care. We argue that while the lived complexities of the body with endometriosis may fall outside the scope of medical practices of measuring, such complexities nevertheless require medical acknowledgment and careful attention.