I was diagnosed with postural orthostatic tachycardia syndrome (or POTS) in April of 2019, after having symptoms of it for approximately 9 years. I sought help from different medical professionals many times over those 9 years, looking for explanations to why I felt so dizzy, weak, nauseous, and foggy at random.
The only answer they ever provided was “it’s just anxiety” or “it’s just depression”. I never received more than a basic blood panel, and was never offered anything in the way of treatment.
While I have no proof, I do believe that I was not taken as seriously because I am a woman, and because I had a history of anxiety. I also believe that the reason I was still treated with empathy, kindness, and patience, despite being dismissed, was likely due in part to the fact that I am a white, cis, thin, able passing, educated person who came from an upper-middle class family.
I bring this up because despite those facts, it was a very, very long and challenging road to receiving a diagnosis, and I was one of the lucky ones. I have heard horror stories from folks who face far more marginalization than I do.
When I finally received a diagnosis, it was only due to the fact that I finally advocated strongly enough that I was referred to a cardiologist. I was put on one beta-blocker that made my blood pressure drop dangerously low. I was consequently told that there was no other treatment option for me, other than staying active and consuming extensive amounts of sodium. In a very short period of time, I saw a primary care physician, two cardiologists (one of whom had a daughter with POTS), and a neurologist. None provided any functional assistance.
I now have a wonderful primary care doctor who does listen and is open to adding additional treatment options, but I did not find her until approximately 11 years into my journey with POTS. A combination of PT which allowed me to increase my exercise (thus increasing stamina), increasing my sodium + fluid intake, and use of my service dog has allowed me to live a bigger life, but the journey here was unnecessarily long, emotionally taxing, and exhausting. And I was one of the lucky ones.