In 2015 a revolt sprung seemingly from nowhere as women began talking openly about chronic, invisible illnesses.
The Guardian Australia journalist Gabrielle Jackson shared her personal experience of endometriosis – the pain, the dismissal by doctors, the impacts on daily life – in a powerful opinion piece. That piece expanded into an international investigation by the Guardian on a condition that had previously received little attention either in the media or among the medical establishment.
In the same year, the US novelist and essayist Leslie Jamison’s seminal The Empathy Exams was released, including essays on abortion, Morgellons disease and extended commentary on the ways in which female pain has been fetishised to suppress women’s voices.
Not long after, the Australian poet and critic Fiona Wright published Small Acts of Disappearance: Essays on Hunger. Writing of her lived experience with disordered eating – the mistreatment of which allowed it to bloom into anorexia – Wright opened up a market among local publishers to share the stories of others with invisible illnesses.
This saw the Australian publication of personal essay collections such as Jessica Friedmann’s Things That Helped: Essays (2017), addressing the author’s postpartum depression. Jackson published Pain and Prejudice: A Call to Arms for Women and Their Bodies (2019). Then 2020 saw a spate of releases including Katerina Bryant’s Hysteria: A Memoir of Illness, Strength and Women’s Stories Throughout History, Jacinta Parsons’ Unseen: The Secret World of Chronic Illness, and my own book, Show Me Where it Hurts: Living with Invisible Illness.
Now, during 2021’s Adelaide fringe, shows addressing invisible illness have become the next step in this movement.
Endo Days is a self-described cabaret, comedy and “singing support group”. Libby Trainor Parker, a festival weekly award winner, highlights the reality of comfy pyjamas, wheat bags and suppositories for women living with endo. She swiftly earns the trust of her audience: they willingly name misdiagnoses they have endured, offer up pieces of demoralising unsolicited advice they have received, and join in endo-themed songs including I See Red and All the Endo Ladies.
Yasemin Sabuncu’s The Illest demonstrates how the accessibility of fringe comedy can open doors to understanding. As she tells of the long, complicated and often traumatic path to diagnoses of endometriosis and attention deficit hyperactivity disorder, Sabuncu leans heavily on humour to convey to her audience the extent of medical mistreatment many women face. Like many waiting for medical help, she tries natural therapies – “discerning yet desperate” for relief – until she finally receives care from doctors. Incorporating pop culture references, which, she says, has been helpful to her own mental health during this time, The Illest is about survival and self-acceptance. It is clear from where the laughs land and the fervent applause that the story resonates.
In Happy-Go-Wrong, Andi Snelling uses bold, exaggerated movement to illustrate her chronic ill health, including Lyme disease. A French angel on rollerskates greets the audience as Snelling uses clowning and mime to create humour and light before the dark physical theatre to follow. We learn that Andi is “trapped behind the fourth wall” and must be freed. As the illness descends, she becomes enveloped in paper: the heavy rolls of it that make up the set building physical barriers, the endless bureaucracy faced by those of us with chronic illness and disability, and the mental battle of being “wrapped in devastation”. It is a gut-wrenchingly powerful performance, highlighting how something as seemingly innocent as an insect bite can irrevocably change a person’s life.
By placing a public spotlight on invisible illness – through writing, on stage and increasingly on screen, such as in ABC TV’s lockdown comedy Retrograde – we see flow-on effects beyond increased community awareness. To focus on endometriosis in particular, there has been a marked change in diagnoses within a single generation.
The Australian Institute for Health and Welfare reports: “Around 1 in 15 (6.6%) women born in 1989–95 were estimated to have been diagnosed with endometriosis by age 25-29 – a figure that is 1.7 times as high as for women born in 1973-78 at the same age.” Given that a diagnosis for endometriosis has previously taken on average between seven and 12 years, younger diagnoses are a huge step forward. I wasn’t diagnosed until I was 28 years old. Sparing others of this prolonged pain and medical rebuttal is hugely motivating to myself, as well as others writing and performing about chronic invisible illness.
Now more than ever women are armed with information. The arts are working in conversation with each other to help open dialogue about the treatment of women in medicine, both historically and today. The success of the sold-out audiences to all three of these shows during Adelaide fringe show that there is an appetite for more stories to be told.
As representation grows after decades of silence, misinformation, degradation and isolation, women with invisible illnesses are finally being seen and heard.