Image description: An image of Lili Reinhart over a table and she is wearing a blue coat. 

Earlier this Spring, Riverdale and Forbidden Fruits star Lili Reinhart, published a frank and honest article with Elle detailing her experience with Endometriosis. This followed her candid announcement on Instagram at the end of last year, which drew an outpouring of love from friends and fans who shared similar experiences. For us in the Endo community, someone with this calibre of fame shouting from the roof tops about the realities of the disease was a win for representation and advocacy, and for me personally – it made my own experience feel validated and a little less lonely. With this post, Reinhart has added ‘advocate’ to her list of accolades – but did she have to?

What actually is Endometriosis? Characterized by tissue similar to the uterine lining growing elsewhere in the body, it’s a chronic disease with no cure — leaving surgery as the only bona fide treatment. Some of the most common symptoms include immense pelvic pain, chronic fatigue, and infertility. However, there isn’t an exhaustive list of symptoms; I had immense ovulation pain and disabling sciatica, compared to Reinhart’s interstitial cystitis. 

It’s a disruptive, aggressive, and surprisingly common condition – data from Endometriosis UK shows it affects 1 in 10 women and people assigned female at birth, putting it on par with diabetes. Yet it doesn’t carry the same cultural representation or scientific research behind it, and many experts attribute this to the gender health gap. For years, medical research was led by men and centered on the white male body, which means serious study of endometriosis is only just beginning. 

As seems to be the norm with those who suffer from Endometriosis, I went through years of agony and unexplained period issues before getting diagnosed. My symptoms started around eight years prior with heavy bleeds and irregular cycles. Instead of being investigated, I was told by medical professionals that what I was going through was completely normal and to try a variety of birth control pills. This ignorance of menstrual conditions seems to be par for the course in most medical communities. 

I developed daily stomach pain and fatigue, and underwent blood tests, invasive camera procedures, diet eliminations – you name it, I tried it. This mysterious disease ruled my life. I struggled to leave the house, I relied on strong pain killers, I felt like I was barely making it through each day. Immense pain flares became commonplace and I was in and out of hospital every month, just hoping for one person to take me seriously. 

Thankfully, one surgeon did. He believed me, operated on me, and found that my ovary and uterus had been fused together for years. But it was such a lonely experience. 

Faced with limited medical support and a research deficit, many Endo sufferers have found themselves turning to the online world for support, help, and representation. 

For Zoë Quilter, British travel blogger and author of The Virtual Quill, the absence of medical support wasn’t just abstract, it was a decade of her life. She started having menstrual problems in her early teens and says “it took until I was in my mid 20s before anyone flagged that the pain I was in was unusual,” she said. Quilter mentions she found British journalist and newsreader, Naga Munchetty, to be one of the voices she gravitated towards online, as well as conservation legacy legend Bindi Irwin and her family. 

And it’s not just the online voices that have made a difference to her, but the stumbling into a community: “It also unites you with your fellow Endo girlies in friendships, because it can reveal to you people you know that also follow this person online and may be suffering in silence,” she said.“Suddenly you have someone in the same boat as you, who you are already close with, and you now have this common ground which allows you to discuss safely.”

So when A-lister and new rom-com icon Reinhart announced her diagnosis, it was quite the positive seismic quake for the community. Her announcement went out to 24 million followers, was covered by news outlets such as The Independent, and featured online by outlets such as Cosmopolitan and People. It would be difficult to measure just how many people were impacted through Reinhart’s openness and honesty. And yet, it is a truly bitter-sweet declaration. 

Why do we have to rely on the good nature and integrity of celebrities to raise awareness of Endometriosis – and furthermore, disabilities in general? Parasocial behaviour is already a minefield online for those with large followings, and to have them opening up about their personal health is another avenue for that. When anyone online shares their diagnosis of any condition, it is at risk of being turned into “inspiration porn”, especially if the person has a huge following. Surely celebrities deserve the space to disclose their conditions in the same way the public do.

Celebrities like Reinhart do deserve peace and privacy, despite what the tabloids might want you to think. But for so many of us, celebrities and social media stars are the only form of disability representation we get – and that tension is something Quilter doesn’t shy away from. “It helps you to feel less alone in some ways, knowing that there are other people out there who get it and speak about it in a way that isn’t full of shame,” she said.

To see them go through what we have on such a public stage, it makes us feel validated. In a world that once again has eugenics and misogyny creeping into politics – just see the inordinate rise of Reform, the severely conservative political party in the UK – a famous voice discussing an aggressive and life-changing disease centred on women’s experience is huge. With Reinhart writing for Elle, discussing the realities of medical misogyny, delays to treatment, and problems of diagnosis, this is another huge step for representation.

However, it is just that – it’s a step. Celebrities and stars shouting from the rooftops does not create immediate change or instantly cause government evaluation. There needs to be change – large scale change in funding, mentality and in medical misogyny. When research is so far behind and government health boards are not prioritising disabilities and chronic conditions, who else can we turn to for representation? It might not be the job they signed up to do, but celebrities and influencers might be the best representation we have right now. 

“The real problem is – regardless of all this, women still fear speaking up or seeking help because of the response they’ll get,” Quilter said. “Being told it’s all in their head, ‘it’s just a period’, or ‘this is what it is to be a woman’; the archaic view of a woman being hysterical.”