Endometriosis Awareness Is Rising Thanks To Social Media

Bridget Hustwaite: “If I’m in pain but if I’m sharing that and bringing comfort to someone else and helping them with their journey like you know, that’s totally cool.”

That’s Bridget Hustwaite, the triple j host and writer who’s now become a kind of face for young people living with endometriosis in Australia. 

She told her personal diagnosis story to triple j Hack back in 2018 and much to her surprise, a lot of young people reached out in response.

She now runs a popular Instagram account that’s dedicated to raising awareness of endometriosis.

I want to find out how Hustwaite’s social media presence has impacted awareness of the condition and more importantly, how social media has become a major space for dialogues like this.

Endometriosis affects 1 in 10 Australian people – that’s cisgender women, non-binary, and transgender people – and the average diagnosis takes between 7 and 12 years.

But common knowledge around the condition has always been lacking, especially since young people aren’t really taught about at it at school.

BH: “I had a 16-year-old message me and I think it’s one message that will always stick with me. She reached out and said, ‘I have really bad periods, I’m in high school but we don’t talk about periods because it’s gross but like, showing these pictures to my friends like now we are talking about it’.”

And that’s just what Endogram (Hustwaite’s account) does – it gets people talking.

Hustwaite is trying to bring awareness to a condition that’s rarely talked about in mainstream media, and it has cleared up a lot of incorrect information being spread about its actual definition – which is that endometriosis occurs when tissue similar to (but not the same as) the lining of the uterus, grows outside.

But what makes Endogram so unique and perhaps so successful is how downright honest Hustwaite is about her personal experiences.

BH: “When you don’t have the diagnosis – because you feel like you’re maybe exaggerating the pain or it’s all in your head – leading up to it, is definitely a lonely experience. Having Endogram and finding this social media community, like it’s insane.”

Endogram has reached over 19,000 young people, making it one of the most popular and influential endo accounts in Australia. And Hustwaite told me that’s probably because there’s been a desperate need for more open dialogue around what endo is, in an easy-to-digest way.

BH: “[My goal] was primarily to create this account for young people to look at these cool vibrant pictures, illustrations and artworks that will catch their eye, and then they read the caption and read, ‘oh uterus, oh blood and you know clots and stuff’. I think Instagram is the most accessible way because of that strong visual element. So that’s why I went there.”

Donna Cicca is the Director & Cofounder of Endometriosis Australia, and she agrees with Hustwaite. She told me that social media has been amazing at bringing people together and bringing more awareness to the online community of endo warriors.

Social media has also allowed this awareness to reach people in more regional areas, who live away from major city resources.

Hustwaite recognises good change has been happening for endo awareness, but she still hopes to be able to do more.

BH: “The last few years in particular, have been so significant. Like in 2018 the national action plan for endometriosis was launched which was huge. There’s Safe Work Australia, [a government agency] who have been putting up things on how to support employees with endo in the workplace, which I think is incredible. One of the big motivations is ensuring that everyone gets the right care. [It’s] not terminal in the same sense as cancer but the complexity of removing it should be held in that regard.”

And this idea of shifting mindsets around endometriosis, so that people treat it as seriously as something like cancer, is shared by a lot of medical professionals. 

The Takeaway

Others just want these open conversations to continue and to allow even more inclusiveness to the endo space.

BH: “Whilst it’s been awesome to see all the progress made in the last few years there definitely still is such a long way to go, but I’m hopeful because I think more and more conversations are being had.”