Our project is the first known study to analyse the language women with endometriosis use to talk about their experiences with the condition and their experiences trying to get diagnosed. Our research finds that women face delays in diagnosis because their symptoms and complaints are routinely dismissed as ‘just period pain’. Our research has also revealed how a lack of knowledge about the condition means that women living with endometriosis are unaware how common it is, are unable to discuss it openly with friends and family for fear of being embarrassed and are therefore more likely to feel disempowered and isolated.
The most important issue raised by this work so far is questioning how women acquire the empowering knowledge of an illness they do not know, or cannot be certain they have, because it is linked to a natural female process and diagnostic treatments are difficult to access or simply unknown. The longer-term aim of the project is to understand what the best way is to describe pain given that the word pain alone and its usual qualifiers such as ‘severe’, fall a long way short in getting doctors to appreciate the magnitude of the pain and symptoms of the disease. We are now focusing on developing a linguistic toolkit for doctors and patients that allows a mutually understood description of symptoms.
A huge thank you to every person who has supported our project so far. Particularly those who have contributed through surveys, interviews, workshops and our online community. You all continue to inspire and motivate us.