The Good Patient

Readers please be advised this article speaks of medical mistreatment of First Nations people, racism, and suicidal ideation.

‘Please’ and ‘thank you’ are normal staples of my language but I use them to excess when in hospital, begging for help with my latest flare-up of endometriosis pain. But my favourite word is ‘Sorry’. Sorry, my veins are hard to canulate. Sorry, the painkillers aren’t working. I basically apologise for my existence and my incurable disease. My sorrys often come from a  place of guilt deep within me when I don’t improve the way some doctors insist I should be improving. As though I’ve chosen to have this disease keep growing back. 

But, the fact of the matter is, no matter how polite I am, how nice I dress or how real my disease is, it will never change my treatment in the Australian hospital system. One where, as an AFAB (Assigned Female at Birth) person, my pain is derided as coming from hysterics. It’s in the news all the time, a constant stream of cis women being told their pain (particularly reproductive pain) is all in their head or isn’t as bad as what they say it is. Gabrielle Jackson’s entire book of Pain and  Prejudice shows how this has been a long term problem, where the term ‘hysteria’ was derived from the Greek word for uterus, ‘hystera’. 

My being dismissed is further compounded by my heritage, causing an intersectional issue where these two parts of me intertwine to intensify such mistreatment. As a First Nations woman, I will always be perceived by some staff members (not all! I’ve been blessed with amazing ones as well) as a drug-seeking Blak who is lying about the amount of pain I’m in. I’m disbelieved, dismissed and outright accused of not having the disease that I so clearly do, as indicated by scans showing my Stage 4 endometriosis twisting up my uterus, ovaries and bowel with adhesions (a diagnosis I fought 9 years for).

The dismissal of my pain has been brutal. After one of my laparoscopies (keyhole surgery), my pain relief was taken away too early. I spent the entire weekend in hospital screaming in agony. I found out later the nurse took it away against the orders of the pain specialist. 

A doctor threatened me that if I came back to the emergency room, they would refuse to treat me, because, by his words, each time I was inside a hospital, I became drug seeking (this magically disappeared as soon as I was outside of hospital apparently). I’d just had a small, but painful procedure and hadn’t been to Emergency for many months; the comment was so out of left field and blatantly false that I was in shock, feeling hurt, confused and betrayed. The truth was, my pain never did, or ever has, disappeared. It just disappeared from the medical professionals’ view.

After my first laparoscopy, the pain returned, and escalated to being constant, so I went to see a gynaecologist at a public hospital to seek a second laparoscopy. Here I experienced one of the most egregious misconducts by a health professional. I’d tried multiple hormonal treatments in the past to help with my disease but I had severe reactions to the hormones, including vomiting, the shakes and horrific suicidal ideation. Because of this, I was terrified of having something like the Depo Provera injection (hormone injection) or an IUD because I wouldn’t be able to choose when to stop taking those hormones if I experienced the same side effects.

The gynaecologist refused to give me a laparoscopy unless I agreed to have the Mirena (IUD) put in. This is a painful procedure in and of itself, and I was one of the lucky women that they wanted to put it in while I was under anesthetic; many women aren’t afforded such ‘luxury’ and are pushed to have it put in and/or taken out while awake and refused pain relief for it. I was in shock, begging for him to listen to my experience with adverse reactions to previous hormonal medications and the real danger of me engaging in dangerous behaviours because of my mental state. He didn’t. After more threats of withholding healthcare, I signed the ‘consent’ papers and came home sobbing. As a young woman trying to come to terms with an often debilitating disability, I felt completely helpless, at the mercy of a hospital system built on coercion, mistreatment and abuse of First Nations women who have come before me.

My experience is nothing new for Indigenous women and people who menstruate

The history of racist medical mistreatment of Indigenous women isn’t well-documented but no less prevalent. We have the history of the lock hospitals, where Aboriginal women were locked away for ‘venereal diseases’. The truth was, the government didn’t want them procreating with non-Indigenous people; those who did have those diseases were invasively experimented on then left to die with little to no medical intervention. Many of these ‘diagnoses’ were done by police officers.

And let’s not forget the ‘family planning’ (fancy way of saying sterilisation) rolled out, particularly in the Northern Territory, to reduce Indigenous birthrate. After the 1966 census of Indigenous people proved we were not a dying race, but indeed, multiplying, the government set out to once again use medical means to subjugate its First Nations citizens (or should I say, flora and fauna?). Doctor Jack Nye said that ‘Aboriginal people were having “much larger families than our intelligent and provident European and Asian citizens”.’ 

While these ‘free’ sterilisations were framed as a positive thing (for who?) to help ‘control’ the Aboriginal birth rate, in their article, Rademaker, Troy & Hurst point out the historical context this initiative rolled out in and why these sterilisations were not just ‘suggestions’: 

‘… these “recommendations” and “encouragements” were presented to women at a time when the Director of Welfare still controlled intimate details of their daily lives … Aboriginal women’s “choice” around fertility took place in a context where women did not have freedom to raise their children, where Aboriginal motherhood was routinely denigrated and where white “experts” spoke openly of “too many Aboriginal babies”.’

This problem of enforced sterilisation has been an issue for other indigenous peoples and their communities. Dr. Jennifer Leason, an Anishinaabe health researcher, says the world needs to finally look at those who enacted such brutality on Indigenous bodies: ‘[I]t is time to redirect our critical gaze and put the people and structures who continue to perpetuate violence, oppression, and genocide under the microscope.’ 

Because, the truth is, no matter how much I’m the ‘good patient’, I will never escape the racial judgement from healthcare providers. Because the mistreatment was never my fault in the first place. I’ve had to learn to speak up, let doctors and nurses know when something is unacceptable. I’ll never win a popularity contest with those staff members or ignorant institutions, but I never did before when I was silent either. In fact, I received further mistreatment because I bought into their deficit viewpoint of me, one where I had to ‘be better’. Better than who, though? The women dragged from their homes in chains to be locked in hospitals? The women coerced into sterilisation? Or perhaps the Indigenous people still refused medical treatment and dying with treatable issues or the Indigenous cancer patients refused pain relief. 

Colleen Lavelle talks on how medical gaslighting even causes us to question ourselves, asking, ‘“Is it me or do they treat all of us like this?” or “Am I being overly sensitive?”’

This history of mistreatment of Indigenous women in the medical industry sits as proof we are not too sensitive; we are discriminated against time and time again, often with dire consequences.

I never did go through with that coerced insertion of the IUD. I exercised my right to a choice, something so many of our Old Women were refused. I speak up for myself and my dignity, if only for the hope that with truth-telling and challenging of long-held archaic stereotypes, that maybe my niece will grow up to be able to go to hospital without having to wear a nice dress and doll herself up while sobbing in pain.