Did Instagram and Facebook censor content around Endometriosis?
If there’s one thing that many of us with chronic conditions strive for it’s to feel visible and heard. There are plenty of barriers around this: whether it’s trying to communicate the nature of a disability that is invisible or helping others understand what it’s like to be in our shoes.
Either way, one instrumental tool in getting our message across is social media. Yet this week, as Endometriosis Awareness Month comes to a close, many took to the internet to share that their posts about the condition, that affects 1 in 10 women in the UK, weren’t being edited or removed by Instagram and Facebook.
In a statement on the 19th March, the charity Endometriosis UK initially explained: “we are being told by our supporters that they are being blocked from posting #endometriosis content online. Please don’t silence our community, when our voices are already not heard enough.”
Emma Gayle, who runs chronic illness clothing brand I’m Fine Attire (@imfineattire on Instagram) is one of many users who has experienced this. “I initially noticed an error message each time I liked a post on Instagram and then it did the same when I tried to comment. At first, I reported the problem not thinking it was connected to endometriosis. The next day my captions and hashtags on posts about endometriosis were being removed and no other posts would load. Our reach has dropped massively since this has happened and our sales and fundraising have been massively impacted. I removed the tag of #endometriosisUK (who the brand is raising money for) from my bio and since then, we can now post again.”
Could it be as simple as having the condition mentioned in your bio? Well Silvia Young, who is an author, playwright and speaker about endo (@fem_truth) has had her account blocked several times this month. “I have been posting endometriosis content and supporting others' content; I have the word endometriosis in my bio and my account has been blocked 3 times this month, due to “protecting the community from harmful content” she explains.
Many of the posts were simply around women sharing their story and fundraising for the charity. Tao McCready,a support group leader for Endometriosis Awareness in the Scottish Borders explains:
“After I shared an official post from the charity Endometriosis UK, I was blocked. I tried to write my own piece and was met with a message from Facebook and Instagram that the contents could not be shared as it went against their community standards. Everything in my post was factual and it would seem that many are being blocked for talking about the condition: how does the word endometriosis go against their community standards?” she asks.
The same thing happened to Jen, who shared with us the warning message she got when she used the hashtag #endoawarenesschallenge. Each time, the message: ‘Try Again Later: We restrict certain activity to protect our community.’ popped up.
Sophie Buchan, founder of @the_endometriosis_diaries used similar community hashtags. “A week later, I noticed my hashtags and caption was removed from posting. I then shared something tagging Endometriosis UK and I was blocked from posting altogether” she adds.
It’s no wonder users are feeling extremely frustrated. It’s not about just sharing personal stories; many users are taking part in challenges this month to raise money for the charity and boost awareness for the condition, which still takes on average 7.5 years to diagnose.
One user Rachel took to the platform to complete ‘a bake 10’ challenge — baking different cakes in exchange for donations to her fundraiser for the charity. Each time she posted on Monday, her entire caption was deleted. “After 5 or so attempts and modifying the caption, it turned out I was tagging Endometriosis UK charity account” she explains.
Le Anne Cheen was also sharing similar posts, this time to Facebook, as part of the 1 in 10 challenge and found that some of these posts were deleted by facebook as spam; with the notification ‘Your post goes against community guidelines on spam.’ It might sound as simple as changing your posts but as Le Anne explains, that goes against everything many are trying to use their platforms for. “I have had to be conscious to change the wording of my posts and not tag Endo UK charity or use any hashtags, even though it defeats the point!”
Endometriosis U.K logo
Several days after this instance, Endometriosis UK released a second statement saying the issue is now resolved but urges users to get in touch with them via email if they still experience any problems.
When we approached them for a statement, Instagram said: “Charities are an important part of our community and we applaud the work Endometriosis UK is doing to raise awareness and provide support. We have resolved the issue brought to our attention and we apologise for any inconvenience caused.”
We know a lot of social media relies on technology and algorithms and it doesn’t always get things right, but those of us with chronic illnesses are already so tired of fighting. Having to fight to even get our photos seen and our voices heard, even if only temporary, just seems to be another way in which we are disadvantaged, or as Tao McCready puts it: “Many of us have fought for over a decade to be heard by the medical community and unfortunately media platforms removing our voices has triggered that feeling of being gaslit all over again.”
Written by Jenna Farmer