Visual reconstructions of endometriosis pain: An interdisciplinary visual methodology for illness representation.

Abstract

Endometriosis is a chronic condition in which tissue resembling the endometrium grows outside of the womb, causing severe chronic pain. Research demonstrates the physical, emotional and quality of life impact on people with endometriosis, but pain is reportedly difficult to communicate, resulting in lengthier diagnosis. This work aimed to gain insight into the value of imagery production as a pain communication strategy through a novel synergy of psychological and linguistic/socio-semiotic approaches. A qualitative, multimodal, participant-generated imagery study. Interpretative phenomenological analysis (IPA) and conceptual metaphor and metonymy analysis were utilized to examine visual representations of endometriosis pain. Data were collected in two focus groups with four and six women, respectively; all with a diagnosis of endometriosis, aged 25-40 years old (M = 34.5, SD = 4.2) and a mean diagnosis delay of 8.4 years (SD = 3.6). The overarching theme across visual representations was 'Pain as Physical Violence' with 'colour as emotional representation', 'texture as sensory qualities' and 'materials as sensation' as sub-themes. These are realized through metaphorical and metonymical relations in both the visual representations as well as the accompanying linguistic representation of the process. This study demonstrates the value of a creative mixed-methodologies approach to capture experiential aspects of pain and its impact that are not verbalized in linguistic accounts alone. This can facilitate a deeper understanding of one's pain, acting as a medium for therapeutic adjustment to occur, while facilitating effective and empathic patient-professional conversations surrounding pain.