'I live with chronic illness. Here's what I want you to know about misogyny in healthcare.'

The establishment of a National Women's Health Advisory Council is a big deal for all Australian women. 

Whilst medical misogyny is nothing new, the government has in 2022 committed to not only acknowledging it, but to fixing it. Formally the domain of patient and medical group advocates, this new push is coming from the top down. It has been commented on extensively in the media this week, with women’s health advocates from Jamila Rivzi to Gabrielle Jackson taking to Twitter and TV screens, with a lengthy segment being run on The Project discussing the topic.

This week the government has announced it's taking action on the silent medical issue that’s killing Australian women. @JamilaRizvi explains how medical misogyny means many women aren't receiving the healthcare they need.#TheProjectTV pic.twitter.com/6DRkJBW8fd

— The Project (@theprojecttv) December 11, 2022

The established council with Assistant Health Minister Ged Kearney as chair aims to ensure that the implementation and utility of the National Women's Health Strategy 2020-2030 is optimised, and that its full impact is realised.

But why is this so important? Well, women and girls across Australia could at any moment be on the receiving end of gender bias healthcare that is rooted in misogyny. And this is not ok.

Watch: Despite rapid advances in the field of medicine, the needs and physiology of women and girls continue to be overlooked within the healthcare system. Story continues after video.

The council aims to reduce the impacts of differences that exist in healthcare for women and girls, with regards to conditions and issues ranging from menstruation to reproductive healthcare and menopause, plus medical consent, pain management and other chronic conditions.

I never met my maternal grandmother. She died before I was born. She died before my mother had grown up. She was just 32 years of age, and my mother, 11. She is a hero in my mind - well both her, and my mother.

You might be wondering why I have such admiration for her. Well, it's her story. Her plight that we will never truly know or understand, a story we have been left to try and piece together, a story that has, in trying to understand it, established a connection between her and I. A connection because, whilst I live with multiple diagnosed chronic illnesses, we suspect it is highly probable my grandmother shared my overarching diagnosis, and was living undiagnosed with the heritable connective tissue disorder and rare disease Ehlers-Danlos Syndrome (EDS).

She was very likely a victim of a misogynist healthcare system. A system that believed women could be hysterical. That the retelling of their health experiences should be questioned for validity. That their pain was exaggerated and that ultimately their stories were somehow not accurate.

My grandmother died in 1970 a week after admission to a psychiatric hospital in Sydney’s inner west, during a time when mental illness was spoken of only in very, very hushed tones, if spoken about at all. The kicker though, recall is - she was very possibly in reality simply living with a misunderstood complex chronic illness that the doctors of her time did not understand (hell, most still don’t), but one that equally was not rooted in psychology. We know that conditions not well understood, even today can be brushed off as being psychological in nature, and that this occurs more frequently when it is women presenting with these poorly defined and understood conditions.

Jacqui O’Brien, Director of Advocacy, Stakeholder Relations and Research at Migraine Australia when asked to comment on the National Women’s Health Advisory Council stated:

“We know that a large proportion of those living with migraine are women - the same women who have faced a battle in getting Health Care Professionals to listen to their concerns, and take them seriously with a multitude of illnesses and conditions…”

Jacqui then went on to discuss the historical view of migraine, detailing that stigma is still a big issue often encountered by people living with migraine:

“The stigma surrounding migraine is still very prevalent in society with many not understanding how debilitating and disabling migraine can be and the flow-on effects to a person's life…”

Jacqui commented that the disabling impacts of living with migraine significantly contribute to the gender pay gap, which can then threaten financial and housing security.

Jacqui concluded that Migraine Australia as an organisation hope for the new Advisory Council to:

“... see a well-rounded education campaign on the chronic conditions women and girls face, including Migraine - which would allow diagnosis to occur quickly and treatment to commence.” 

Similarly Melbourne based artist Michelle Hamer who is currently working on a project exploring dismissal and disbelief in healthcare has been inundated with messages and documents from people around the world wanting to share their experiences with her. Almost without fail they are overtly gendered. 

These stories of dismissal and disbelief are stories that repeat themselves again and again. Patient health advocate and writer, Natalia Hodgins who has lived with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) for the past six years said: 

“...as I became disabled I was gaslit, denied and dismissed by one doctor after another. It took years for me to understand the history of ME/CFS; how it was minimised and ridiculed by doctors for decades because it largely affects women and gender diverse people.”

Natalia goes on to identify that it is systemic issues such as a drastic lack of research funds coupled with the lack of care received by these largely disenfranchised patient groups that are of critical importance; 

"... it’s these systemic issues that need to be addressed for people living with ME/CFS, EDS, fibromyalgia, endometriosis and other stigmatised chronic diseases…"

Natalia commented further that the Advisory Council:

“... is a step in the right direction, however I don’t believe the council will affect real change without strong representation from the disability, chronic illness and LGBTQI+ communities. We need deep, lived experience on this council…” 

People w/ complex, chronic illness exist in bodies that are not yet understood by science/medicine. This is a tough space to inhabit. It makes life hard & is more than enough 4 anyone to deal with. Why then, do we as a society insist on making life even harder for this community?

— Natalia (@NataliaHodgins) May 27, 2022

This is why the announcement last Friday of the Federal Government's intention to establish a National Women's Health Advisory Council was absolutely a watershed moment for me - a moment of realising that maybe, just maybe we can change the course of healthcare for women dramatically, and positively so. That may be experiences of dangerous misdiagnoses which can derail hopes of a correct diagnosis being made, along with inherent practitioner disbelief for many women’s conditions will evaporate in 2023 Australia and beyond.

Despite my grandmother's story being a historical perspective of gender bias healthcare and one I will never have all the answers or insight for, I have had countless similar tales recalled to me in recent years. Tales from women living with rare, complex, chronic and often medically unexplainable illnesses which have left me with the same sense of bewilderment in the healthcare experience they received in the present day.

Experiences which for many women are recounted as; sub-optimal, often a waste of their time and energy and in many cases traumatic. With diagnoses taking far too long, pain minimised or ignored and women being over or under treated. Overwhelmingly these experiences quite simply detail care that is not on par or even close to that of our male counterparts. 

Early intervention and adequate management of acute pain states can play a critically important role in reducing the risk of tipping acute pain over into a more permanent chronic pain state. This is just one clinically apparent example where disbelieving women and girls can directly cause harm.

So with this news, let us see not a single Australian woman or girl left out in the cold to navigate and manage a health system that has until now harboured systemic flaws left over from a bygone era. It's time to bring healthcare in Australia for one half of the population well and truly into the 21st century (where it should have firmly already been for the last two decades).  

Hope is plentiful in chronic illness circles with this news. Chronic illness circles, made up of predominantly women.

As Natalia so eloquently puts it:

“I dream of the day when women and gender diverse people can walk into the doctor's office, describe their symptoms and be believed - no questions asked.”

Below is a top five list of influential healthcare advocates you really should be following if you are not already:

• Eliza Charley
• Natalia Hodgins
• Tracey Spicer
• Gabrielle Jackson
• Michelle Hamer

Janna is a 37-year-old mother of two residing in Sydney's Eastern Suburbs with her young family. She lives with the chronic illness and rare disease, Ehlers-Danlos Syndrome as well as ME/CFS other co-morbid conditions. Janna is a pharmacist, medical writer and chronic illness patient advocate. You can follow Janna on Instagram @The.Rare.Writer.

Feature Image: Instagram @The.Rare.Writer.

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