“It’s all in your head” is killing disabled women.
There is sexism in medicine.
Between the female doctors who are assumed to be nurses and the women whose symptoms are cast aside and ignored, arguing that women are treated the same as men in the doctor’s surgery is the same as arguing that the gender pay gap doesn’t exist.
Welcome to what I’m calling ‘The Gender Pain Gap.’ In a world where women have to work twice as hard as men for half the pay, we also have to prove our symptoms are twice as bad for half the care.
Day-to-day, for able-bodied, generally healthy women, this isn’t a massive issue.
We can go to the shop and pick up a pack of paracetamol for pennies and getting antibiotics for infections isn’t massively difficult either.
But for chronically ill and/or disabled women, receiving adequate medical care isn’t that easy.
Katarina Brandt is a chronically ill woman from Los Angeles and she has experienced first-hand the sexism that’s so rife in the medicine industry;
“I think disabled women experience more discrimination than men do, as well as more ableism. Women wait longer for the same diagnoses and longer for pain medication in emergency rooms. Those are just two examples.
Sexism is deeply ingrained into our society and no establishment or institution is immune to that. The medical industry certainly isn’t.Katarina Brandt
“Women with autoimmune diseases are often told that it’s just depression or anxiety causing our symptoms. In 2017 I was diagnosed with hysteria (yes, like the Freudian kind) by a top neurologist who wanted to just write off all my very scary stroke-like episodes as psychosomatic. The entire ideology behind diagnosing anything as psychosomatic is deeply rooted in sexism as well.”
Psychosomatic illnesses are thought to be caused by mental, internal issues such as stress with outwardly displaying symptoms. A psychosomatic diagnosis is patronising and condescending because it trivialises a patient’s health issue.
By delaying and dismissing health issues in this way, doctors are putting their patients at risk. Issues can go undiagnosed and untreated for months, leading to further complications down the line.
Since her initial, ludicrous diagnosis of hysteria, Katarina has been diagnosed with a multitude of chronic illnesses that are so often overlooked by doctors, including Myalgic Encephalomyelitis (ME), Hashimoto’s Hypothyroidism, Fibromyalgia and Endometriosis.
None of Katarina’s conditions have a specific cause or cure, but all of them either exclusively effect women or effect more women than men. Can you see the pattern?
Not nearly enough research has gone into these conditions, because women are their biggest victims, so it’s easy to pass them off as psychosomatic, just as doctors did with hysteria years ago.
The term ‘hysteria’ is no longer a common term in modern medicine. Instead, it has now been masked, disguised and facaded into names such as ‘Briquet’s Syndrome’ and ‘Somatoform Disorder.’ These come under an umbrella of ‘mental illnesses that exhibit physical symptoms.’
Synonymous, one might say, with ‘it’s all in your head.’
Why is medical sexism so rife?
Sexism is so common in medicine because the conditions that affect women the most are grossly misunderstood, under-funded and under-researched. There is a huge pool of scientific research just waiting to be discovered if doctors and scientists valued women’s health just as much as they valued men’s health.
Katarina isn’t alone in her experience of misogyny in medicine.
Blythe Parkes suffers with Anterior Cutaneous Nerve Entrapment Syndrome (ACNES).
ACNES is a syndrome that causes chronic pain in the lower abdomen when nerves become entrapped in abdominal muscles.
Although Blythe got her diagnosis from a male doctor, her experience with them in the most part has been a patronising and tiring one, and it has made her fearful to speak to male doctors:
“Female doctors tend to be more sympathetic and take symptoms more seriously than male doctors. A lot of [male doctors] that I’ve seen have tried to play off my health problems as ‘not as bad as I’m making them out,’ or they wouldn’t listen to all the things I had to say
“For example, a lot of the time they tried to tell me I had IBS or depression when neither of those things fit my symptoms. Female doctors did listen a lot more to everything I had to say. Whenever I saw a female doctor they would attempt to understand more about my situation, and didn’t play it off as “woman problems” as much as male doctors did.
“That being said I did actually get diagnosed after about 3 years by a male doctor, but in general 90% of them were male anyway so a large amount of my experience was with male doctors.”
Across the pond, Katarina acknowledges that sexism in medicine is a huge problem, but it isn’t just women who are suffering. Disabled people of all genders are battling every day to have their symptoms taken seriously;
“I think that every chronically ill person has experienced ableism from a medical professional. Many of us are disbelieved and gaslit into thinking our experiences don’t matter.
“Doctors often stress that looking ‘normal’ is more important than our health. When I asked my doctor about needing a wheelchair (at this point I was severely ill and definitely needed one), she made it very clear to me that she thought using a wheelchair was a bad idea, even though it could improve my quality of life.
“It made me so much more sick to not have access to the mobility aids I needed desperately and it hurt that my doctor, who I trusted at the time, would make it seem so horrible for me to use a wheelchair.
Both Blythe and Katarina’s experiences with medical sexism and ableism is not just representative of GP surgeries and hospitals, but the medicine industry as a whole.
Medial research: much the same?
Up until the 90s, women of ‘childbearing age’ were banned by the Food and Drug Administration (FDA) from taking part in early-phase medical trials for fear of putting future offspring at risk. Universally-used medications were designed specifically for men based on how their bodies reacted to the testing, with no record of how it may affect a woman.
Because our fertility is so much more important than our health and wellbeing, right?
This means that women are all-too-commonly prescribed medicines that were developed with men’s bodies in mind.
Women and men react to medicines differently; whether that be the way we metabolise a drug or the way a disease presents itself. Drugs, similarly to diseases, are not one-size fits all.
But historically, that’s the way they’ve been approached.
The lack of research into women’s medicine has, inevitably, led to a lack of knowledge, meaning that doctors don’t even have the right tools to properly diagnose their female patients.
In 2014, the Director of the Office for Women’s Health for the NIH told the New York Times: “We literally know less about every aspect of female biology compared to male biology.”
How can we expect to receive adequate, effective medical treatment if medical professionals don’t properly know the bodies they are diagnosing?
The second medical hurdle
As well as the fight against medical sexism, disabled and chronically ill women have to face another issue which affects disabled people of all genders, ages and races: ableism.
Outside of the medical world, amongst the wider community, casual, ignorant, unconscious ableism is on the rise in the wake of COVID-19.
Since the coronavirus lockdown ensued, many able-bodied people have found themselves in the same boat; we’re all missing our friends, none of us can go on holiday and we’re all increasingly conscious of our health.
Guess who else is in the boat, and has been sailing for years:
The pandemic means that many of us are now housebound due to self-isolation, social distancing and the nationwide lockdown, but this has been the reality for chronically ill and disabled people for a long, long time.
The only difference is that provisions have been put in place by governments and employers that allow us to continue working and living life as normally as possible.
These are provisions that disabled people have been begging for – and denied – for years.
In order to keep life moving smoothly, work, education and entertainment platforms have all moved online and we’ve been able to function reasonably at home.
For people like Katarina, this is frustrating and debilitating because she was forced to miss out on completing her university education thanks to her illnesses:
“I’ve had two big things I’ve missed out on because of accessibility issues: finishing college and adequate medical care. Universities often have extremely ableist policies in place when it comes to disabilities. As for medical care, I’m actually too sick to go in to see my doctor at this point.”
But for current university students, education and lectures have moved online and are completed largely by video-link to avoid large gatherings. Why couldn’t these kinds of accommodations be put in place for people like Katarina when she initially got her diagnosis?
“Under our capitalist system, our worth is often tied into our ability to work.” Katarina told me. “If you’re disabled and can’t, you’re labelled as ‘lazy.'”
In a blog post, ME sufferer Lorna detailed the both the differences and similarities that disabled and able-bodied people are experiencing in the wake of the COVID-19 crisis.
She noted that people are unable to socialise, travel or do things as and when they please; something that has been a reality for disabled people for the longest time.
But through the pandemic, able-bodied people still have insurmountable security; we have functioning bodies, the luxury of knowing that ‘we’re all in this together,’ and the knowledge that there’s light at the end of the tunnel. These are perks that do not exist for disabled people
As well as a systematic disregard of disabled peoples’ rights, the pandemic has brought another dangerous development to light in the form of Do Not Resuscitate policies.
According to a number of sources, elderly and vulnerable patients have been contacted by their GPs to discuss the implications of the DNR forms.
An investigation by The Bristol Cable told the story of one woman who was contacted by her GP to update her medical records. The COPD sufferer was told that updating the records would mean that she would not be taken into hospital nor receive medical care should she contract COVID-19.
Asking disabled and elderly people to sign forms stating that they do not wish to be resuscitated in a medical emergency suggests that we value the lives of able-bodied people more than we do the vulnerable. It’s this internalised ableism that is separating us further and further from achieving equality for disabled people.
It’s for this reason, as well as many others, that Katarina believes we’ve barely scratched the surface of achieving equality for disabled people. When we talk about feminism, many marginalised groups are starting to become part of the conversation; black women, transgender women and sex workers, to name a few. But disabled women are still getting left behind in the fight for gender equality and disabled people are getting left behind in the fight for equality overall:
“Accessibility isn’t just about wheelchair ramps and elevators. There are SO many barriers to accessibility that many people would never consider; financial restrictions, transportation and a never-ending list of things are barriers to accessibility. Every disability is different so accessibility isn’t just one size fits all.”
If anything positive comes from COVID-19, may it be that able-bodied people learn a stronger empathy, tolerance and understanding for disabled and chronically ill people.
To read about Katarina’s experience with medical sexism from a first-hand perspective, visit her blog here.