A few months ago, pre-COVID, I caught up with a lovely new mate who I’d met during Melbourne Fringe. Leah Filley is a theatre maker, actor, and published chronic pelvic pain activist.
Photo of Leah Filley looking beautiful outdoors and not at a pub, shot by Joey Lai.
We grabbed a coffee and chatted about the exciting new project she’s working on: a documentary adaptation of Gabrielle Jackson’s book of the same title, Pain & Prejudice. With importance on inclusive language* I flag that this book uses Jackson’s personal experiences as a cis woman with endometriosis as an axis for her research, and as someone who hasn’t yet read the book, I can’t speak to the extent of queer experience inclusion. Jackson includes a Note On Language at the start of her book spotlighting the general lack of LGBTQIA+ research in the endometriosis field at the moment. She uses the word ‘women’ to generalise her research, which is particularly felt in the book’s promotional language:
“Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish. The stark reality is that women's pain is not taken as seriously as men's. Women are more likely to be disbelieved and denied treatment than men, even though women are far more likely to be suffering from chronic pain.” (Read more)
This book, and Leah’s documentary, are an exploration of how social stigma and the hysterical woman trope are literally causing us undue pain.
It’s both exciting and reaffirming to see other artists creating works to unpack chronic pain stigma. We’ve been compiling a list of artists to share our platform with other projects that explore experiences of chronic health and healthcare and recommend you check out the cool shit. Hopefully the more voices, the more awareness around these experiences, the more we can converse about them, and the more change we can make.
Leah and I, after getting booted out of the café at closing time, wandered down to a pub. “Two girls with endo walk into a pub” sounds like the start of a contrived joke, but no. We had an incredible and raucous conversation about our chronic pain dating lives and the way hormonal treatment can impact self-confidence, emotions, and even libido. Just by light heartedly sharing experiences we’d kept private, we realised how much we’d felt in common, and the relief it was to be heard and understood without judgement. It was a cathartic, hilarious conversation and I think about it often.
I invited Leah to Zoom into Get Well Soon to have a chat about the emotional vulnerability of putting private pain on stage, drawing on her experiences from her (tear jerking) performance in Mullygrubs. We spoke about caring for each other, de-roling after shows, and excellent resources available from The Arts Wellbeing Collective. We thank Leah for sharing her time and insight with us, and value the connection with the chronic pain community. We’d love to keep having these conversations, so please hit us up if you’re interested in chatting to us.
*If you’re new to the inclusive language space, I personally recommend getting a copy of Cara E. Jone’s study “Queering Gendered Disabilities” which does an excellent job of explaining the importance of using gender-neutral language for endometriosis. It explains how our language can empower better access to healthcare for everyone, and that’s what we’re all about.