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  • Writer's pictureCaroline Louise

FRIENDOMETRIOSIS: The Importance of Community When Living With A Chronic Illness

Social media has become a lifeline for women living with Endometriosis - a debilitating disease which affects 1 in 10 women globally. ‘FRIENDometriosis’ is an Instagram account which chooses to “look on the bright side” of this chronic condition through shared experience, advice and meet ups.

Casey Harris, 32, from York started ‘FRIENDometriosis’ in August 2022 with the hopes of meeting other women battling Endometriosis. “I can’t believe how lonely I was before I created my Instagram and made the decision to be more open about my endometriosis”, she said. “I’d always keep quite about my condition and never really opened up about it.” She now has a community of over 2,000 followers and shares posts about information on Endometriosis, artwork and updates on her own journey. “My style is to be open and honest, but I also want to do it in a light hearted way – not toxic positivity at all, but I do like to look on the bright side when I can”, Harris explained.

For Endometriosis awareness month, Harris decided to move the community from the media space to the physical with a meet up in York, aptly named ‘EndoMEETriosis’. Instead of tickets, Harris asked for period product donations to The Hygiene Bank York which by the end was overflowing with contributions. Also, CH Handmade created yellow heart badges specially for the event, to be sold to raise money for Endometriosis UK, in the end they raised over £170. “This community is so helpful and kind, everyone is supportive and encouraging”, said Harris.

Endometriosis is a condition where cells, similar to the lining of the womb, start to grow in other parts of the body for example the bladder or bowels. The NHS has listed the condition, for which there is no cure, as one of the 20 most painful conditions. Harris’ journey with endometriosis started in 2019 when, after a diagnostic laparoscopy, she was found to have stage 1 Endometriosis on both ovaries. However, in March 2022, an MRI scan showed her Endometriosis is now stage 4, deep infiltrating and in many more places than when she was diagnosed. There are adhesions that are sticking both of her ovaries to other organs and her uterus is stuck to her bowel.

Harris says that community is “so important” when battling Endometriosis. “The chronic illness community are so accepting”, she said. “I don’t have to ‘prove’ my symptoms are real like I have done with doctors and other medical professionals.” Social media has created a space which normalises chronic illness. On TikTok the hashtag #chronicillness has over 8 billion views and on Instagram it has over 5 million posts. Users share anything from memes, their lived experience and advice to reviews on products and messages of support.

Harris hopes her meet ups can be a yearly thing for each Endometriosis awareness month to get people talking about the illness but also, give other women like her a place to feel understood and welcomed. In the meantime, she is continuing to connect with more #endowarriors over social media.

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