05/16/2021
“The most lonely condition I can imagine”
Most studies regarding endometriosis focus on physical symptoms. The psychological impact of the disease has also been studied even though secondary to the physical aspect. One such study calls endometriosis the most lonely condition imaginable. The study discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations.
The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves and about reactions from medical and social connections prompting feelings that they were going “mad”. Participants also expressed feeling as though they were a burden to loved ones, which often resulted in self-silencing. Findings are discussed in the context of Western expectations of women’s roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.
Many women with endometriosis wait decades from first reporting symptoms to receiving a diagnosis. Women have reported that they often feel as though they had to “be [their] own doctor” and be strong advocates for themselves because of reluctance to diagnose and even treat endometriosis by health professionals. The condition has also been positioned as psychological as well as physical with the consequence that women are constructed as hysterical or difficult if they do not present themselves in certain ways in interactions with clinicians.
Given the reports that endometriosis symptoms are often trivialised by doctors, it is unsurprising that friends and family also struggle to understand the potential seriousness of the condition. Friends and family are described as mistaking experiences of endometriosis symptoms for being in a “bad mood”; misunderstanding by family and friends, colleagues, and intimate partners is frequently discussed as a source of distress for women with the condition.
A woman with endometriosis may be forced to rethink the role she plays in her relationships (and the role of these relationships in her life) as part of the rethinking of self-concept due to the disruptions that endometriosis causes in her life. How the person with the condition views themselves may change in order to accommodate any effects on their lives and relationships. The study suggests that this may lead to positive outcomes in the relationship. However, the expectation that a feminine role in relationships is self-sacrificing may potentially hamper a woman’s ability to “mobilise resources” needed to renegotiate her identity after an endometriosis diagnosis.
Another important aspect is regarding the way women view themselves regarding their fertility. There can be psychological distress if women with endometriosis internalise clinician assumptions about the importance of treatment related to fertility. Emphasising motherhood for women with conditions affecting fertility and/or menstruation may result in these women feeling that they have failed in their role as a woman.
The pressure for women in pain to repress negative feelings may be emphasised when the pain is related to the “intrinsically unpredictable, leaky and disruptive” female body because of taboos associated with menstruation. In attempting to maintain their role as a good partner, mother, and daughter, women experiencing endometriosis symptoms may choose coping strategies which are incompatible with self-care, such as self-silencing.
https://journals.sagepub.com/doi/full/10.1177/0959353520930602
