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1https://pixabay.com/photos/secret-lips-woman-female-girl-2725302/
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.
