Understanding women's health: the online expression of endometriosis pain

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    Dr Lorna RichardsonSchool of Art, Media and American Studies, answers questions on discussions between endometriosis sufferers on Reddit.

    How does endometriosis affect the wellbeing of sufferers?

    There are very well-documented delays in the diagnosis and treatment of endometriosis worldwide. Decades of research has shown that there is widespread misunderstanding and trivialisation of the experiences of pain and suffering by non-specialist medical practitioners. Living with the disruption and uncertainty of endometriosis is an enormous challenge for patients, families and medical practitioners. The pain, symptoms and gendered nature of the disease often leads to a significant level of isolation amongst sufferers. Being taken seriously, finding information and obtaining long-term support to navigate the complexities of treatment options, means those with endometriosis need to become ‘expert patients’.

    Why is Reddit a reliable source for the feelings of endometriosis sufferers?

    Reddit has upwards of 400 million users, and over 2.8 million fora, known as subreddits, on a wide variety of subjects. They are open to view by anyone, and registration for a Reddit account is free and anonymous. Although participant norms and behaviour are different on each subreddit, the structure of the platform frequently supports information-focused activity (posting, up-and-down voting), rather than extended inter-community relationships. Reddit can be a good source of information for the healthcare researcher, as most subreddits are accessible to the public, they are anonymous, and free to access for study. There are numerous subreddits that discuss a wide variety of medical conditions from the perspective of ‘expert patients’ to share experiences and help navigate daily life with these conditions. We accessed two specific endometriosis Reddits, r/Endo and r/endometriosis, for our research, and we analysed around 70,000 items from these discussions.

    What emotions were the Redditors expressing on the forums?

    In these subreddits, we found that there was a sense that the pain of endometriosis ‘will never end’. The posts showed that the experience of horrendous and invisible pain brought a sense of fear of a loss of control over the body, a loss of personal dignity, and a significantly reduced sense of self. There are feelings of shame and failure, compounded by the stigma of the almost universal experience of menstrual taboo.

     

    "Being able to verbalise the experience of pain, to speak it into a reality which can be affirmed by others, is to be acknowledged and heard."

    How and why is verbalising pain helpful for endometriosis sufferers?

    Pain is an individual and personal experience which is intrinsically isolating. Being able to verbalise the experience of pain, to speak it into a reality which can be affirmed by others, is to be acknowledged and heard. Bringing pain into a public relationship via the Reddit platform, for acknowledgement and reciprocal support, reinforces the collective experience. It reduces feelings of isolation and in turn supports the feelings of epistemic authority of the collective patient experience in these spaces. These spaces can be absolutely revelatory for healthcare practitioners and researchers who want to better understand how, where and why expert knowledge is received and understood.

    What can society learn from online forums like R/Endometriosis?

    These digital spaces can underline what gaps exist in the provision of information, and more importantly, help to understand the unmet mental health and emotional support needs of those with a disease that affects more than one in ten people assigned female at birth.

     

    Read ‘Endometriosis pain and epistemic community: Mapping discourses in online discussions among sufferers’ in full in Social Science and Medicine

    Dr Lorna Richardson's research concentrates on the transformative role of digital and social media in public discourse. She is particularly interested in how digital society can lead to the repurposing of expert knowledge in online spaces, and how non-experts negotiate relationships with expertise in these spaces.