Why Seeing Representations Of Chronic Illness In Pop Culture Matters

Welcome to the next instalment of Junkee’s Chronic and Iconic column, a lil’ chunk of internet that is dedicated solely to the experiences, issues and successes of disabled and chronically ill communities. I hope with this column, I can help to amplify the stories of my beloved community, as well as help people learn and challenge their ableism.

When I started developing bizarre and painful symptoms across my body as I became an adult, one of the most overwhelming feelings I experienced was bewilderment.

I didn’t know anything about chronic illness, I didn’t know anything about the condition that I’d years later be diagnosed with: fibromyalgia. I didn’t have anywhere to look or anyone to turn to, aside from the doctors who readily shrugged off my pleas for help and dismissed them as anxiety, psychological delusion, or me simply being dramatic, attention-seeking, hysterical.

I had never seen or heard of anyone having widespread unexplained pain, I had never seen anyone with chronic illness on television, I had never heard anyone tell their own experiences about chronic conditions in books, movies, documentaries. For people like me, there was very, very little in the public sphere to give you some sort of solidarity or validation that your pain and experiences are real. The feeling of being able to relate your experience, to see a life or body similar to your own on a screen or in the pages of a book was fairly unheard of.

For people who are chronically ill, there was next to no ‘relatable content’ until very, very recently.

There’s been an extraordinary uprising of chronic illness representation in the last six or so years. The various books, movies and television released that actively and accurately portray chronic illness is incredible, and the birth of a new wave of disabled and chronically ill people being able to tell their own stories (as I spoke about in my previous column) is phenomenal.

It’s unimaginable to my younger self, who longed to be able to see a body like my own on screen or relate to stories in the books I read. While it’s been joyous to watch, it’s also been something that’s made me extremely emotional. It’s a strange feeling: I’m both overjoyed for young chronically ill people today who will be able to find solace, affirmation and community through this, and at the same time I am heartbroken for my younger self that needed that representation so badly, and instead had to muddle her way through, lost, confused, alone, and eventually convinced it was all in her head by doctors who didn’t have any duty of care.

There are shows, movies, and documentaries specifically dedicated to the stories of chronically ill people, like Kumail Nanjiani and Emily Gordon’s autobiographical film The Big Sick, a must watch movie about navigating a very new relationship through chronic illness, and SBS’s groundbreaking series Homecoming Queens, Michelle Law and Oliver Reeson’s semi-autobiographical series, which delves in about friendship, alopecia and cancer. There’s also been documentaries, like Lady Gaga’s Gaga: Five Foot Two, delving in her life with fibromyalgia and how she manages it while touring the world, as well as The Punk Singer about riot grrl legend Kathleen Hanna, who battled Lyme Disease.

However, one of the things that has surprised me the most in the last few years was seeing chronic illness spoken about candidly and openly on shows and movies that are not specifically about chronic illness. Chronically ill characters and people featuring on television and cinema screens, and written with empathy, dignity and accuracy (and with some of the fictional shows, often written by chronically ill people themselves). ABC’s digital series Retrograde featured a character with dysautonomia, and Netflix’s 2020 reboot Degrassi: Next Class features a teenage character, Grace, who is navigating all the classic issues of high school while living with Cystic Fibrosis.

Another big surprise, one that made me exceptionally emotional, was the astonishing and impressive chronic illness representation of drag reality show RuPaul’s Drag Race. Beginning with season 11’s Yvie Oddly, who spoke openly about living with Ehlers-Danlos Syndrome and how it affects her career and ability to perform as a drag queen. (There’s also an episode of Werq the World, a doco series following RPDR queens on tour, which shows footage of Yvie crying her makeup off because she was in so much pain during a flare up.)

This year, RuPaul’s Drag Race delivered even more chronic illness representation, with queens Tamisha Iman — who is in remission after having cancer, and was performing complex choreography while wearing an ostomy bag — and the UK’s Ginny Lemon, who responded to critique about her “grandma heels” by telling the judges she has to wear low heels because she has fibromyalgia. She also chose to dramatically leave the show stating she was “ready to go home now, because [she was] knackered” — a scene that held the most enormous chronic illness energy that I physically screamed at my television and I now pledge to stan Ginny Lemon 4eva.

More locally, the Adelaide Fringe is happening as we speak in South Australia and this year, the program includes shows about chronic illness, written and performed by chronically ill people — ‘Endo Days’ by Libby Trainor Parker, and ‘The Illest’ by Yasemin Sabuncu. Sabuncu’s show delves into what happens when you feel “the illest” but the medical industry fails you — in her words, it includes “taking ayahuasca with shamans, vagina crystals, near death experiences” and of course moving to Australia’s “Mecca of wellness” —  Byron Bay.

Live shows about these sorts of experiences are radical and can be life changing — coming from SA, my younger self would have been beside herself in awe to watch a Fringe show that exactly described the bizarre health issues I was facing. Chronic illness really does make you feel alone in various ways — like you’re the only one going through it, secretly and desperately trying anything you can to make yourself feel better — so shows like Jeavons’ and Sabuncu’s, that speak openly, honestly, and sometimes brutally about it all, are groundbreaking and have the ability to change lives.

The number of books about the lived experiences of chronic illness has also soared in recent years. I really can’t put into words how important this is — when I first got sick, I searched far and wide for a book that could help me figure out what the hell was happening to me, or at least give me some solace that I wasn’t alone. But all I found was a bizarre array of self-published self-help books, with covers created with Word Art and some VERY questionable medical claims about “cures”. Snake oil books. Today, we have major publishing houses printing the words of chronically ill writers who are telling their experiences earnestly, honestly, and without any Pete Evans-esque woo-woo bullshit. To name just a few, Katerina Bryant’s Hysteria, Jacinta Parson’s Unseen, everything Fiona Murphy has released, Gabrielle Jackson’s Pain and Prejudice, How to Endo by triple j’s Bridget Hustwaite, and Kylie Maslen’s Show Me Where it Hurts: Living with Invisible Illnesses.

“I was motivated to write [this book] because I knew it would have made an enormous difference to me as a 13-year-old, 24-year-old, 30-year-old, etc. Not only in helping me understand what was happening to me physically and mentally, but also in explaining this to those around me,” says Kylie Maslen. “I wanted readers with invisible illnesses to know it’s not in their head, their pain is real. I wanted this book to be an act of validation, a place of comfort, as well as a call to action. I don’t have the ability to run for parliament or work in healthcare, but I can write. So writing is my way of being useful in the hope of change.”

There are many, many more books that have been released in just the last five or six years, and there should be many more to come, because if there’s just one common truth about chronic illness it’s that everyone’s experience is completely individual. Our experiences might overlap or have commonalities; we may be able to relate to one another’s symptoms or management or feelings, but our experiences are also uniquely our own. And there is space for all of our stories.

Don’t get me wrong, I’m not saying representation is peachy and perfect now — there’s still an enormous way to go with the representation of chronically ill and disabled folk in the media. Our stories are still used as inspiration porn, and are still stolen from us to be written and delivered by able-bodied people. Physical disability is still often portrayed as villainous, and stories about neurodivergence are still badly delivered by neurotypical people (ahem, Sia). So, there’s still miles to go before we can say we’re being represented accurately, fairly, truthfully.

But there have been enormous strides made in the last handful of years, and it’s been a privilege to see. It’s been a joy to watch the chronically ill and disabled creators of these books/shows/pods/movies carve out their space and make themselves heard, to tell their stories for themselves to the benefit of the wider community.

It’s exciting to watch our voices grow and louden, and thrilling to see this revolutionary momentum roll on and on. It can only get greater and more powerful from here — so let’s go.

Chronic And Iconic will be published monthly. If you come across any chronic illness and disability news, stories, or issues we can feature in this column, please get in touch.

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Chloe Sargeant is a Sydney-based writer, reporter, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast. She’s currently writing a book about living with fibromyalgia, and you can find her at @chlosarge on tweeters/insta.