Exploring disempowerment in women’s accounts of endometriosis experiences

Abstract

This work explores disempowerment caused by discourses surrounding the life-altering gynaecological disease of endometriosis. Despite affecting one in 10 women, the worldwide average diagnosis time is 7.5 years, and it is mainly diagnosed when exploring infertility rather than complaints about incapacitating pain and other associated manifestations. The aim of this article is to identify dis/empowerment caused by discourses in the healthcare and social environment of women as manifested in their accounts of endometriosis experiences. Having been informed and shaped by a corpus analysis of online forum data, this work explores accounts collected through interviews with women who have endometriosis using discourse analytical tools. Through an examination of the dialectics between micro-level language choices inscribing agency, or lack of, and macro-level discourses in the contexts in which women interact, the findings indicate that disempowerment is mostly a consequence of the perceived lack of agency over achieving diagnosis and knowledge of the condition in order to understand and learn coping strategies. The article concludes with implications for endometriosis communication practices and suggestions for broader enquiries in the field.