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

Hyunjin Seo, K Macy Burkett, Moses U. Okocha, Huang Ha, Huong Ha, Rim H. Chaif, Rim Chaif, Nazra Izhar, Michaella Barros Coelho, Blessing Jona, Azhar Iqbal
Digital health · 2025 · vol. 11 , pp. 20552076251314905 · doi:10.1177/20552076251314905 · PMID:39839958 · W4406681024
article OA: gold CC0 ⤵ 4 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-10 ⓘ

This study analyzed Instagram posts about endometriosis, finding users discuss living with the disease, pregnancy, awareness, and well-being, while incorporating themes of invisible disability, solidarity, and activism.

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Abstract

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.

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Condition tags

endometriosis

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Cites (4)

Cited by (4)

References (26)

Cited by (4)

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europepmc
last seen: 2026-06-04T01:30:01.192114+00:00
openalex
last seen: 2026-06-10T17:14:06.276822+00:00
pmc
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pubmed
last seen: 2026-05-30T00:32:00.638912+00:00
License: CC0 · commercial use OK