Being Disabled: Healthcare and Gender

{This series is based on my personal experiences re. living with disability, in my case Chiari & Intracranial Hypertension with Migraine & assorted comorbid unpleasantness, that has kept me housebound for several years.)

If you’ve ever alluded to holding feminist beliefs or mentioned gender biases in our society on social media, you’ll know that there are two very common responses from men, (specifically the ones who don’t like women much). They go something like this:

1) You’re just a man-hating feminazi! Sexism doesn’t exist, everybody is equal now, so shut up!

2) You’re so pathetic, moaning over catcalling/equal pay/sexual harassment! You should live in Saudi Arabia where women have actual problems, that’s what you’d be talking about if you were a real feminist, so shut up!

But despite what edgy, angry teenagers on social media (and the edgy, angry adult men who never grew out of shrieking at women on Reddit) would have you believe, gender does have an impact on how a person is treated in our society, in every sphere of life. The same is true for disability – it colours how we experience life, since we’re constantly trying to effectively navigate systems that were not designed for us or were in fact deliberately constructed, at least partially, to keep us out.

If you happen to be both a woman and disabled, your experiences of work, family life, healthcare, pretty much everything, will be different to that of abled men. Race, socioeconomic background, weight and being LGBTQ are also significant factors re. the assumptions made about a patient by medical staff but for the sake of this post, I’m focusing on my personal experience of biases that seem to be gender based and how they influence my interactions with the healthcare system as a disabled person. My accent & related socioeconomic associations and my weight are parts of me that also tend to trigger unhelpful biases on the part of medical professionals I interact with but my broken brain can only grapple with a limited amount of this stuff in one go!

While disabled people share many life experiences, there can be significant differences depending on gender. Healthcare is, in my opinion, a world where such biases & prejudices pop up frequently and can do the most harm. From the GP surgery to the consultant’s office to the hospital ward, women are viewed and treated in certain ways that men are not.

I have long felt, after decades of experience, that my symptoms are not taken as seriously when presenting at A&E as they would be if a man was presenting in exactly the same way. This applies to symptoms linked to my disability and those that are entirely separate, such as kidney stones. The first time I presented at A&E in agony with the kidney stones I didn’t yet know I had, I had to get past two male doctors who were simply not registering the severity of my pain, despite the fact that I couldn’t sit or lie still, I was crying, shaking and throwing up every 15 minutes. It’s hard to imagine that a man presenting in the same way would have to wait so long and fight so hard to be taken seriously. I mean, this went on for hours. Thankfully, male doctor number 3 took one look at me, asked 2 or 3 questions then said “Pain this bad in those areas means a kidney stone is wedged somewhere it shouldn’t be. I’ll get the morphine.” God bless him & keep him.

(In case you’re curious re. the rest of this little story, there was an obnoxious little family of kidney stones that I’d been quietly growing for who knows how long, including the big, stuck one. I was admitted that day & spent 10 days in hospital doing fun things like having a stent fitted, having lithotripsy to break up the biggest stones into passable pieces & treatments to deal with a nasty infection.)

I’m not alone when I struggle to get medics to grasp the scale of my pain and address it with the appropriate speed. Research shows that women are less likely to be taken seriously than men when presenting with severe pain. This is both reassuring (I’m not imagining it!) and pretty depressing (oh God, it’s happening everywhere, how can we ever hope to fix it?).

Another area of healthcare in which women can expect different treatment to men is at the crossroads where physical conditions and mental illnesses meet. It comes as no surprise to me personally that women are more likely to be prescribed anti-anxiety meds when presenting at hospital with pain and are more likely to be written off as psychiatric patients. Anecdote time again – I was told for 20 years that my debilitating and progressively worsening symptoms were all due to Chronic Migraine. But looking back, it’s astounding just how early my Neuro arrived at the conclusion that a Psych evaluation was appropriate, just to check that it wasn’t all in my mind. I was a very young woman at Uni (still in my teens) who had never shown any signs of having an underlying mental illness, yet when the first couple of Migraine treatments had no impact, I was assessed by a shrink. He reported that there were no significant mental health issues, which I of course already knew. I asked my consultant why he’d asked for the assessment; he said it was ‘part of the protocol’ when chronic head pain doesn’t respond to treatment. It didn’t occur to me to ask if it was part of the protocol for men in my position (oh, to be young and innocent) but since Migraine is more common in women, I suspect I know the answer. It’s somewhat infuriating to this day that ‘I better check she’s not mentally unstable or a compulsive attention-seeker’ was the response to failed treatments, as opposed to ‘hmm, perhaps I should check for other physical causes/disorders, just in case my diagnosis isn’t spot on.’ (Insert heartfelt sigh here).

I did start to learn one lesson at this early juncture in my journey with the healthcare system though; I now knew that signs or diagnoses of anxiety or depression might well be grasped as convenient reasons’ why the treatments weren’t working. I noted the unhappy fact that doctors who were failing to treat my symptoms effectively could not be trusted to help with the mental illnesses that almost inevitably arise at some point when you live with chronic pain, lest they use the depression/anxiety caused by my disability as convenient causes of my disability, thereby relieving themselves of the burden of finding a treatment that works for a ‘difficult’ patient. It dawned on me over time that the word ’emotional’ appearing anywhere in my notes would have a negative impact on the quality of treatment I receiveda situation that didn’t exactly encourage me to seek support in that area. Is the same true of men? I’m sure having a mental illness has a negative impact on how their physical ailments are treated too, but the ’emotional womanstereotype & the history of hysteria lurking in the all too recent past of modern medicine (it was removed from the DSM in 1980, only to be replaced with ‘Conversion Disorder’) are burdens that are borne by female patients.

There are many examples of women and men being treated differently in healthcare settings, but I’m going to resist the urge to pour it all into one post, as much for the sake of my own mood as for the stamina of the reader! I will allow myself a moment to point out the obvious though; such inconsistencies and unjustified biases in healthcare have a significant impact on the lives of chronically ill and disabled women. We spend so much of our lives consulting healthcare professionals and following their advice, in both emergency and non emergency scenarios, that a doctor who is for example more likely to prescribe strong pain meds to a man in pain than a woman in pain poses a threat to our physical and emotional well-being. Medical trauma is a real and ghastly thing; it is important for development of good practices to know just how much of it is caused by the gender biases at work in our healthcare settings. Furthermore, the areas where gender intersects with a patient’s other identities, such as race, urgently need attention. After all, a black disabled woman will share some experiences with a white disabled woman re biases they face but also some that are unique to being a black disabled woman. Certain disabled women are facing so many intersecting forms of discrimination and bias that their interactions with the healthcare system end up doing significant harm to their well-being.

But in one brutal and unavoidable way, medical trauma is, if not the desired outcome, at least not the worst; to carry such trauma forwards with her, a woman must have survived having her pain underestimated & the required treatment delayed by the assumption that she’s just an anxious or histrionic female.

Disabled women – have you ever felt that you were receiving different responses and treatments from medical staff than they would give to a man?

Kindra.

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