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I makes me very angry that people are getting POTS after contracting COVID. Why did it take a global pandemic to shine some light on something hundreds of thousands of patients suffer from? It takes, on average, 7 years to get a POTS diagnosis cuz no one knows anything about it.
I have a lot of complicated feelings about this. As someone with post-viral POTS, I don’t want anyone to get it because I know exactly how devastating and debilitating it is. And there just aren’t the resources to deal with an influx of POTS patients on this level.
I’m literally reading about folks on the news talking about the advice their non-POTS specialists are giving them on how to deal with it, and I want to scream because they don’t know WTF they’re talking about. The condition is profoundly not understood in the medical community.
My own PCP doesn’t know shit about POTS. My neurologist who isn’t a POTS specialist doesn’t know shit about POTS. Most of my specialists don’t have a clue, forget the public. Now we’ve got tens of thousands of new patients who are going to have no one to turn to on this.
Very few doctors specialize in dysautonomia. There is no funding. No research. No awareness. Some areas have only *1* POTS specialist in the entire state. But yes, please, have the NFL players wear pink sneakers for breast cancer awareness. No one knows about that rare bird.
It’s enraging and it hurts to see so many people suffering and without the guidance of someone who specifically deals with POTS patients to help them navigate and treat it the way I am so fortunate to have help from my POTS specialist neurologist and my neuro-gastroenterologist.
I only hope this leads to a huge increase in awareness and funding, and more doctors choosing to educate themselves about or even specialize in dysautonomia. Cuz there are a lot of us POTS patients, and we need help, and there are about to be way more of us due to COVID.
