It’s Made Up Until It Isn’t: Dysautonomia and Medical Misogyny

When I was about 11 years old, I started having heart palpitations and episodes of shortness of breath. I had grown up with visits to the cardiologist emblazoned on my annual schedule. I was born with a bicuspid aortic valve, which I had always known would require open heart surgery someday. Until then, we’d keep an eye on it and excuse me from a few PE classes. The palpitation problem, however, seemed new and distinct. And it wasn’t temporary. The symptoms didn’t go away — they got worse. I was having palpitations multiple times a day. Standing up from bed or from a desk at school would make me dizzy or outright faint. I would get freezing cold and my lips would turn blue. I was exhausted all the time. Something was clearly wrong.

But the first pediatric cardiologist that I saw wasn’t impressed. He seemed skeptical the entire appointment, and at the end, he turned to my mother and made a snide comment. “Well, you know how girls this age are,” he said, as if that would somehow cancel out my symptoms or make me a liar by default.

He was wrong. I wore a cardiac monitor for a month and it recorded hundreds of palpitations. Some were mostly benign bouts of palpitations like tachycardia, though there were a few concerning incidents of SVT, which required a surgical catheter ablation procedure. (So much for my implied hypochondria.) Specialist visits and a trip to the Mayo Clinic confirmed that many of my symptoms were being caused by dysautonomia, an umbrella term for disorders that impact your autonomic nervous system, which manages temperature regulation, blood pressure, heart rate, breathing, your GI system, and basically any automatic process in your body. Some of the most common types include vasovagal syncope and postural-orthostatic-tachycardia-syndrome (POTS), the latter of which impacts one in 100 teenagers and an estimated total of 3 million people in the U.S.

Dysautonomia has a long history of being misunderstood or misdiagnosed. It impacts women more than men — specifically, it impacts young women, who are also the most likely to be written off as “crazy” or otherwise dismissed. Our medical system does not take the pain, discomfort, or autonomy of young women seriously in so many ways, and that’s on display in full force here. That’s how it’s been for a very long time in this community, meaning that treatment and research have also been in short supply despite the prevalence of our suffering. Dysautonomia International’s co-founder Lauren Stiles reflected on this while talking to author Maya Dusenbery about women’s experiences with health care in 2018. “Assuming POTS impacts the more conservative estimate of 1 million patients, it’s getting 1 million dollars a year at NIH; MS impacts 400,000 patients and gets over 100 million dollars a year,” Stiles pointed out.

But things have changed since 2018. Specifically, since 2020, people have been coming down with long COVID; long COVID currently impacts about one in five people who contract the virus. Many of these patients, who experience a plethora of neurological and cardiovascular issues, end up getting diagnosed with dysautonomia. Google searches for dysautonomia and POTS both spiked in and after 2020, with “long COVID” coming up as a frequently related inquiry. This has led to an influx of attention and resources to dysautonomia, including multiple research hospitals opening up dysautonomia-focused clinics, and a wave of fresh engagement in support groups.

Dysautonomia can be debilitating even if you “look healthy” on the outside, which many people with long COVID are learning. Add in the prejudice that women face as patients and it’s clear that dysautonomia is a lose-lose situation to cope with as a patient. Newcomers are shocked to find that even if their symptoms are truly debilitating, they can still be brushed off or told that it’s because of stress. That isn’t to say that psychological things don’t influence dysautonomia; stress can and does exacerbate dysautonomia. When I was a young teen, my symptoms got so severe that I was stressed enough to develop terrifying somatic panic attacks alongside my palpitations.

You know what’s fucking stressful, though? Trying to convince a doctor to take your symptoms seriously and watching your health decline as they gaslight you or dismiss you. It’s not like our symptoms would magically go away if we had amazingly competent doctors, but it makes a huge difference when you don’t have to jump through the hoops of educating and persuading your medical provider.

October is Dysautonomia Awareness Month, and more people than ever are talking about this in the medical community and in the general public. I am thrilled about the change in discourse, but I’m also hesitant about it. Over time, whose symptoms will be taken seriously by these new clinics and researchers? Will cishet white men with long COVID get referrals to neurologists and cardiologists immediately while women and nonbinary people get sent to psychiatrists first?

Those barriers to treatment will probably exist, unfortunately, if the current structure is allowed to replicate itself. Comments like those that I heard at the beginning of my dysautonomia journey — “you know how girls this age are” — aren’t outliers. Dysautonomia has laid bare what medical misogyny can look like. The medical sexism dysautonomia patients face is a well-documented source of frustration and harm in the community. Many of us have spent years being dismissed at every turn while our symptoms worsened.

I’m not mad about the new attention and funding directed at dysautonomia; we need it desperately. But we’ve needed it for decades. When the problem was pervasive but mostly impacting young women, it was apparently not worth attention, funding, or validation. Now that it is a literally contagious issue — now that our suffering can be caught by men — it is a revolutionary priority in the medical and public health fields.

I fear that just throwing money at the field without examining its very problematic areas will only serve to replicate the systemic oppression. When we talk about dysautonomia awareness, we need to talk about the insidious history of medical misogyny toward our community and prioritize dismantling that bias. We need to ensure that the resources and funding we’re getting will actually benefit more than just long COVID patients. We need to change how dysautonomia is diagnosed, treated, and talked about. Otherwise, women and femmes will continue to be excluded from the progress we make.

People have ignored or demeaned dysautonomia for decades. But dysautonomia isn’t going away this time. It’s here to stay. The question is whether or not the medical field will leave the patriarchy in the past and treat the epidemic of dysautonomia in young women with the seriousness we deserve.