From "The Girl Who Cried Pain" To Here
Updated: Jul 5, 2020
As someone who got awarded "Most Likely To Call In Sick To Their First Day Of Work" in high school, I reflect on this creative development as a great opportunity to call in sick.
Last November I applied last minute to Springboard (an inaugural contemporary circus funding program from Melbourne Fringe and Circus Oz) with a working title "The Girl Who Cried Pain" (after its namesake medical literature review) and a small crew of circus artists who engage with me about chronic pain and illness. Since then, a global crisis has shaken our schedule and forced our creative development online. Somewhere in there I had the dumb idea to rename as Get Well Soon, partly because I enjoy irony, but mainly as a conscious shift towards more gender inclusive language.
For me, Get Well Soon is an arts advocacy project to help share and understand experiences of chronic pain and illness. I'm particularly vested in chronic pelvic pain. I have endometriosis, which is nothing exemplary from "1 in 10 other women" around me - I flag that this stat is an icky, binary generalisation. The disease doesn’t discriminate against gender identity. Endometriosis also doesn't discriminate on wealth or security, and I reflect gratefully that I’ve been fortunate with steady access to healthcare and insurance.
Stigma around chronic pain has impacted many facets of my life. I listen and connect with my friends who share these experiences; the struggles to get a diagnosis; the undignified and expensive medical procedures; the tolls on employment; the fears around dating; the feeling like a burden. I always find myself humbled and empowered by their vulnerability and strength. There's a real sense of relief in finding out you're not alone. Yet, I still carry some fears around sharing my intimate and brutal experiences (there’s no ladylike way to talk about this, sorry mum). I'm still navigating it, and that's okay.
Endometriosis is hard to explain as a layman like me because there’s still a fundamental lack of clinical understanding around it. The condition sits comfortably in the contemporary abyss of "women’s health" research, hence the recent drive for awareness and funding in Australia. I’m going to try and pastiche the learning I have throughout this project, but note that there is no substitute for specialist medical care (even though I’m sort of about to question that too).
The major takeaway is that there is no cure for endometriosis (yet). It is both a common and complicated disease. Here's a plot twist: there’s no clear correlation between visible evidence (like adhesions), and presentation of pain. This means a body with a grain-sized growth could be bedridden by pain, where a reproductive system fully cemented by adhesions might present no pain at all. Endometriosis is also a highly individualised disease, and people experience it very differently with all manner of fun bonuses, like chronic fatigue and anxiety.
This is the brutal reality that makes this disease so insidious to manage. Doctors can treat physical symptoms without guarantee of alleviating someone’s pain. We can even opt to undergo a hysterectomy with no perfect promise that it will improve our quality of life. Despite all the press around Lena Dunham’s decision to have her womb removed, this is not a universal recommendation. The pain from endometriosis is, in some cases, inescapable.
I’ve read endometriosis pain be likened to gun shots, third degree burns, stab wounds, and blisters - as if your abdomen was filled with bursting, fluid-filled blisters for open wounds that leave you unbearably swollen and raw. But sure, it’s just period pain. Without mincing words, some attitudes towards endo truly, deeply suck: like this funded research to "evaluate physical attractiveness in [cis] women with and without endometriosis". Why invest in researching a cure when you could research the hips-to-waist-to-breast ratio of your patients instead, hey?
I struggled to get diagnosed. The current delay for diagnosis sits between 7 to 10 years from first presenting endometriosis symptoms. My pain started with my first period but I (like most of us) was under the false impression that it was just my womanly allotment to suffer. Socially and medically we normalise symptoms of endometriosis i.e. heavy blood loss, severe cramping, severe bloating, pain during ovulation, pain while bleeding, pain urinating, pain during sex, and pain after sex (and/or a pick-and-mix of those). What’s more, a lot of endo bodies will suffer unbeknownst to themselves because the contraceptive pill (which is Australia's most commonly used form of hormonal contraceptive) is one of the best ways to mask/manage these symptoms. After an acute, gory few months of pain and getting hand-balled in and out of A&E and GPs who'd just write it off as stress, I finally moved home from London to Perth to see a specialist who listened. Right on par, I was almost 22 (7 years after my first period) when I finally got my surgical diagnosis.
I’ve since come to learn that my personal trials with the healthcare system are just a part of a wider systemic problem.
I felt my frustration from years of medical dismissal was finally affirmed when I happened across “The Girl Who Cried Pain”, a now 19-year-old critical analysis of gender bias in medical pain management. The answer in short: yes, there is gender bias in pain management. Bias harms all of us (men, women, here noting that this paper sadly fails to acknowledge any experience of gender diversity) in different measures, but is particularly insidious to mistreating the "female pain experience".
The paper found that female presenting patients were more likely to be given sedatives than painkillers for pain than male presenting counterparts. Another supporting study of 1,000 emergency room patients found that women presenting the same pain scores as men were 25% less likely to receive opioid pain medication, and were made to wait on average 15 minutes longer. The academic assertion that we are more likely to be under-treated or inappropriately diagnosed and treated for their pain is a lived experience for myself and countless AFAB folks I know.
Authors Hoffmann and Tarzian present a number of study-supported factors that may contribute to this imbalance in care, a list that is grimly sensical:
Women are socialised with better behavioural coping mechanisms to deal with pain (“cognitive coping" including seeking social support or relaxation), which contributes to a perception that we can ‘put up with more’ than men (“problem-focused coping” with denial or avoidance, i.e. drinking) and don’t need to be taken as seriously;
While women more frequently report pain to their health-care providers (and have a higher prevalence of chronic pain syndromes), men with chronic pain take longer to seek treatment and are therefore more likely to need an aggressive entry to the health-care system and cases are taken more seriously;
Women, also socialised to care more for our physical appearance, are more likely to groom ourselves before seeing a physician than men, which contributes to the proven bias that health-care providers assume “physically attractive” patients are in less or no pain; and
Women’s pain reports are more likely to be discounted as ‘emotional’ and therefore “not real”.
The implication of this research isn’t that doctors are universally sexist dopes, but a criticism of Western medicine’s “overemphasis” on biological evidence of disease and injury. Unlike Eastern medical practices that align head, heart/soul and body, Western medical training mostly relies on “clinical fact” and places lesser importance on ‘subjective, experiential reports’ of pain. In conditions such as endometriosis where there is no biological (“factual”) gage for pain, medical practitioners are forced to rely on a patient’s subjective accounts for diagnosis (noting also an increasingly difficult ask amidst scrutiny of a global opioid crisis). This is a burden on both practitioners and patients; we are all unavoidably conditioned by bias, and are all human enough to let these factor into even our best judgements.
So, that's my attempted summary of the first research that informed this project. This is where storytelling comes in; to vocalise frustration and create visibility for people who identify with having chronic pain or illness. I love circus as an art form; as someone who can't even touch her toes, I love its physicality and spectacle. I've seen circus that both challenge and entertain - such a vibrant way to shift stigma. I used to share a desk with the wonderful Andrea Ousley, who explained to me her passion of teaching with circus: that movement can transcend language barriers, it's an incredible tool for engagement and learning.
Learning is a big part of this creative development. We understand that intersectionality needs to unpin meaningful social change, and we're using intersectional frameworks to help understand our own privileges and intersecting identities, particularly queerness and our whiteness. To launch this project in the BLM movement and fail to acknowledge systemic racism in healthcare is careless, so we've included readings and resources to listen and support Australian Indigenous and BIPOC communities as well. Learning and unlearning are an on-going process.
I recognise that I'm a bit of an idealist, and while I believe in this conversation not everyone will agree with me. I feel so fortunate to have received so much support for this project thus far. I sincerely hope that this becomes an opportunity to start more conversations, to engage with chronic pain communities, to build a reading list for folks who want to learn, and to work with some incredibly talented and passionate young artists in creating something cool and new.
And to my High School sports teacher who literally awarded me "Most Likely To Call In Sick To Her First Day At Work" - I hope I get to see you at my upcoming 10-year reunion so we can have a lil chat about identity, I'll invite you to our show.