When the eyes do not see what women feel: Pain in the narratives of women with endometriosis

Abstract

This was the experience of 20 women diagnosed with endometriosis in their first and poignant dimension – pain – based on a survey among virtual groups. This article aims to discuss the meanings attributed by women to pain caused by endometriosis, as part of the inner dimension of protagonism of living with this disease. Bertaux gave the methodological arrays of the research through the method Narratives of Life. The discussion about the material was supported by authors who discuss the topic endometriosis and chronic illness, but, above all, by the anthropology of pain of Le Breton and the medical anthropology of Cecil Helman. The narratives start from the metaphorical and clinical explanation of pain so that the interlocutor can reach the dimension of this phenomenon in what it means for them to live this symptom. Something that, in an initial moment, paraphrasing Aureliano, is named of performativity. In discussing the invisibility of this symptom, one can discuss its unfolding, which runs into disqualification. The conclusion is that the narratives in this study were triggered from a performativity that aimed to counteract the current trivialization to which women with endometriosis are submitted.