POTS, Or How One Man Ruined Everything for Decades

Speech for Talking Bodies: A Reinvention of the Vagina Monologues

Happy Election Day? I guess? If you’re looking for something to read that’s not about exit polls or early predictions, here you go.

On November 3, I was a speaker for “Talking Bodies: A Reinvention of the Vagina Monologues”, a fundraiser by University of Iowa’s Medical Students for Choice student group for the Emma Goldman Clinic. The organizers were looking for new pieces to expand the scope of the original monologues, so I wrote a piece about why people with POTS have such a hard time getting diagnosed. Spoiler: it’s because of one asshole Australian cardiologist in the 1940s.

This is a very high level overview of my research into the history of POTS. This was a five minute speech, and so it glosses over a lot that I’ll expand on later. The main point is that it didn’t have to be this way.

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It began as so many things do, with a late night Google search. After a few months of weird episodes, I asked the internet, a blemish free institution known for its particular expertise in medical diagnostics, “Is it normal to pass out when you stand up?” The answer was a swift and resounding “no”.

I went into my primary care provider, and he took my heart rate when I was laying down and then took it again when I was standing up. Because there was a greater than 30BPM difference, he said I had a likely case of something called POTS and sent me off to a specialist to rule out some other things. It wasn’t complicated.

A few months and several cardiologist visits later, I got an official diagnosis. I had POTS.

For those not in the know, POTS stands for “Postural Orthostatic Tachycardia Syndrome”. It’s an autonomic nervous system disorder that make your heart beat abnormally fast when you go from sitting or laying down to standing up. That heart rate increase can make people with the disorder faint, or more commonly feel like they’re about to faint, whenever they’re upright. It can also cause painful palpitations, fatigue, excessive sweat, migraines, severe chest and neck pain, brain fog, and more.

There’s a lot of things that trigger POTS, but it’s most commonly activated by having a virus. It’s not rare – at least a million Americans have it – and there are records of POTS going back to the Civil War.

But while POTS is common, stories like mine are pretty rare. I got diagnosed about 6 months after my symptoms started. It usually takes nearly 6 years. 69% of people have their condition dismissed as anxiety before eventually getting a diagnosis. And before the pandemic, most physicians didn’t even know it existed.

When I first learned this, it didn’t make any sense to me. If POTS isn’t rare, is pretty easy to diagnose, and has been around for forever, why on earth are people struggling for 6 years before they get treatment?

The problem is that 80% of people with POTS are women. And that’s where things get complicated.

I was pissed off by the disparity between my experience and the average person with POTS, and I wanted answers. To be honest, I wanted something, or someone to blame. Instead of turning back to the internet, I asked my friend Ellen, a librarian to help me. Ellen helped me pull the original medical journal articles by Jacob Da Costa from 1871 that described what he called “effort syndrome” – a phenomenon he saw in soldiers, usually after they had typhoid fever, where their heart rates would increase dramatically from laying down to standing up and cause all sorts of other problems. The descriptions of his patients’ symptoms were eerily identical to my own. Effort syndrome was also known as “irritable heart syndrome”, “soldier’s heart” and “Da Costa’s syndrome”, and it was recognized for decades as a very legitimate condition that necessitated care.

However, as awareness of Da Costa’s syndrome grew, it became clear that this wasn’t a condition that just affected soldiers. It was common in civilians – and overwhelmingly common in women.

And this is how we get to Paul Hamilton Wood. Paul was an Australian cardiologist and a bit of a medical celebrity practicing in London during WWII – and while he’s long dead, he’s still honored with a yearly named lecture in Zurich. He was a big fucking deal.

To put it mildly, Paul was a racist womanizer who didn’t like Da Costa’s Syndrome. In 1941, 70 years after Da Costa first described this condition, he went on a lecture tour and wrote a three article tirade in the British Medical Journal about how he had the answer to Da Costa’s Syndrome – it wasn’t a real problem for cardiology, it was obviously an anxiety disorder because it was overwhelmingly experienced by women and also the “emotional races” which to him were Jewish and Italian people and weak men who “clung to their mother’s skirts”. He said “patients must be induced to believe that they are suffering from the effects of emotional disturbance and not from any disease” and that effort syndrome had to be dropped as a diagnosis immediately.

And as it was written, so it was. Effort syndrome disappeared from medical journals. As Paul wanted, patients were dismissed as “psychoneurotics”. But that didn’t stop people from developing my condition – it just prevented them from getting help.

About 50 years later, two doctors at Mayo Clinic, Ronald Schondorf and Phillip Low, bravely renamed things as POTS and began the slow process of getting medical providers to believe in women’s experiences. But Paul Hamilton Wood’s influence is still overwhelmingly present in modern medicine.

Because one man didn’t like or believe women, for over 80 years, doctors everywhere dismissed women who needed help. And it took a pandemic that killed millions of people and disabled even more to even begin to open their minds to the possibility that these patients had something other than anxiety going on. The patriarchy isn’t just an invisible system surrounding us – it’s made up by people. I have never felt more defeated and angry than when I learned how Paul Hamilton Wood ruined things for so many people like me. An apple a day may keep the doctor away, but in the case of POTS, I think that apple’s rotten right to the core.