When we talk about the effects of long-term conditions, we often focus on the physical effects of such conditions. Though there is awareness that these physical effects have social and personal consequences, these consequences are often comparatively neglected on research agendas. In our qualitative research on endometriosis we wanted to explore these social and personal consequences, looking specifically at identity and relationships.
What is endometriosis?
Endometriosis describes a condition which predominantly affects women where cells similar to that of the endometrium (lining of the womb) are found elsewhere in the body. These cells can then respond to changes in hormones just like the lining of the womb does and can cause pain and other symptoms, such as diarrhoea and sexual difficulties, as well as debilitating and painful periods.
Despite a lack of awareness of the condition, there has now been a lot of research on its effects on women’s everyday functioning. Chronic pelvic pain in particular is a common symptom and this type of pain can have a profound negative effect on the mental health of women with endometriosis. There are now many qualitative and quantitative studies on endometriosis, which demonstrate the potentially negative impacts of condition on quality of life and on interpersonal relationships.
How do women with endometriosis negotiate the effects on their relationships?
Our own research explored how experiences of endometriosis affected how women talked about their identity and relationships with others. We conducted an online survey which asked for answers to open ended questions about various specific everyday contexts (friendships, romantic relationships, working life etc) and how endometriosis symptoms may affect women’s lives in these contexts.
We learned that some women had difficulty managing their physical symptoms alongside fulfilling what they felt was expected of them in their personal relationships. We saw evidence of something called ‘self-silencing’, which was proposed by Dana Jack in 1991 as an explanation for the particularly severe effects of depression on women. Jack argued that Western women are socialised to hide their own distress in order to avoid conflicts in relationships, but that this leads to a divided sense of self that can be associated with mental health problems (this coping strategy has been linked to poor outcomes in HIV, heart disease and cancer).
Through the answers our participants gave us, we were able to see some of the disruptions to their identity, and therefore their relationships, that endometriosis might contribute to. Our participants talked about feeling “not like themselves” anymore and about the frustration that this caused. They also talked about how they felt treated by others; their struggles with endometriosis were minimised and not believed. Some women expressed feeling as though they were “going mad” because of feedback from others that they were making a fuss over nothing, or that their physical struggles were “all in their head”. The women often coped with these struggles by putting the needs and feelings of others in their relationships before their own, and, ultimately, hid discomfort and distress to avoid worrying other people or because they feared their reactions.
What does this mean for our understanding of endometriosis?
The study that we conducted represents one collection of stories from women who were predominately White and heterosexual, so many of the experiences we learned about may be specific to this group. However, our data does show the importance of considering the social context of women’s experiences of long term conditions, and how this may affect their coping strategies.
If women with endometriosis do have a tendency to silence their distress, health professionals treating these women should be aware of this. This awareness can then inform attempts to provide a safe space where women are able to talk about the potential psychological distress associated with endometriosis openly.
About the authors
Jenny Cole is a senior lecturer in psychology with particular expertise in social psychology. Her research focuses on women’s health, body image and digital technologies.
Sarah Grogan is Emeritus Professor in the Department of Psychology at Manchester Metropolitan University, UK. She researches body image and links between body image, gender, and health-related behaviours.
Emma Turley is a senior lecturer in criminology at CQ University and a critical psychologist with specialist areas of interest including gender, social justice and inequalities, LGBTQI+ issues, feminism, subculture, sexualities, and the digital world.