Social media activism and women's health: Endometriosis awareness and support

Objective While endometriosis is estimated to affect 1 in 10 women globally, awareness of the disease as well as research and funding to fight the disease remains lacking as compared with other chronic diseases. This study examines how social media users utilized Instagram to raise awareness of and...

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Main Authors: Hyunjin Seo, K. Macy Burkett, Moses Okocha, Huong Ha, Rim Chaif, Nazra Izhar, Michaella Barros Coelho, Blessing Jona, Azhar Iqbal
Format: Article
Language:English
Published: SAGE Publishing 2025-01-01
Series:Digital Health
Online Access:https://doi.org/10.1177/20552076251314905
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Summary:Objective While endometriosis is estimated to affect 1 in 10 women globally, awareness of the disease as well as research and funding to fight the disease remains lacking as compared with other chronic diseases. This study examines how social media users utilized Instagram to raise awareness of and mobilize activism around endometriosis by analyzing prominent topics, word associations, and feminism themes in endometriosis-tagged posts on Instagram. Methods We used a mixed-method approach of combining computational analyses (topic modeling and word association) and human coding (qualitative thematic analysis) of Instagram posts on endometriosis. Results Our results show that while Instagram users discussed a variety of issues related to the disease on the social media platform, these issues tend to focus on four topic areas: (i) living with endometriosis, (ii) pregnancy and endometriosis, (iii) awareness and empowerment, and (iv) women's health and wellbeing. In addition, social media users widely incorporated three feminism themes: (i) bringing attention to invisible disability, (ii) solidarity and support among women, and (iii) advocacy and activism around women's health. Conclusion People with endometriosis use Instagram to create an online public sphere for raising awareness of the disease, offering networking and support to other endometriosis patients, and creating a movement for enhancing women's health and wellness. In doing so, they are also addressing sexism and misconceptions about endometriosis that have traditionally contributed to normalizing women's experience of pain associated with endometriosis and consequently delaying endometriosis diagnoses.
ISSN:2055-2076