What is endometriosis? Patients turn to social media for information and support

I published a very short introduction to my dissertation research on The Conversation. You can read the full article online here.


The history of patient-blaming haunts contemporary conversations around social media use. Patients turn to social media in the face of discrimination and mistreatment, but are further dismissed if they bring up that social media use in the doctor’s office.

The way that social media use and endometriosis are both gendered ties into histories of dismissing womentrans men and non-binary people.

Although consulting health information often makes patients feel more knowledgeable, empowered and prepared, bringing it up during appointments can lead to conflicts and distrust between the patient and doctor. However, when both parties discuss online health information openly, it can actually improve the patient-practitioner relationship.

Opening up to patient-produced knowledge and representations can help expose the gaps that exist in endometriosis care. As my research shows, people with endometriosis are hungry for information and proper treatments.

Advocacy around the disease has never before been so widespread and accessible. Including the data produced on social media in our endometriosis literature may help us create better futures for both patients and providers.

Feature image by @TheEndoMonologues

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