EMaLe Social Media Reseach Collaborator Eileen Mary Holowka provided commentary on the linked The Times’s endometriosis SoMe article from last week, which itself featured FEMaLer Andrew Horne.
“As the Time’s piece highlights, there are a number of challenges facing people with endometriosis, such as patient dismissal, a lack of specialized doctors, limited research and funding, as well as sexism, ableism, and classism. Social media has provided people with endometriosis an unparalleled platform to resist these challenges.
Endometriosis social media communities provide patients with recommended doctors, tips for their appointments, strategies for coping with pain, social support, and places to represent their experiences and be heard. Those with endometriosis have also used social media networks to correct misinformation about the disease, lobby for policy changes, and push for funding. Although patients are often dismissed for going online, it is clear that social media is an incomparable tool for those with endometriosis who have faced so many barriers to care.
For many of us, myself included, social media was the first place we heard about “endometriosis,” despite years trying to receive care. In the face of such dismissal, the turn to social media can be a life-changing option.”
Read the full article here.