I have been having dysautonomia symptoms for the past decade. I had a full cardiac work up, full GI work up, full endocrinology work up, and have had so many heart monitors for varying periods of time. For TEN YEARS I was told that there was nothing wrong with me. That it was all in my head and that I was just anxious. I had walked out of plenty offices sobbing. I knew something wasn’t right and nobody listened. Thank god my PCP is an angel on earth and entertained every possible avenue I offered and didn’t scoff at my personal research. Ultimately the conclusion was that I had POTS (via poor man’s tilt table test and other factors). Hurray, 10 years of gaslighting is over! Except it’s not, is it?
While I understand that POTS is a relatively new syndrome and Dysautonomia is very complicated, it’s not like theyre are brand new disorders. They were not discovered yesterday. And honestly, the lack of recognition by providers is just…insulting. How many of us have been gaslit and traumatized because specialists weren’t up to date on current information in their specialties? PCPs I could understand since it’s not like these are every day issues. But specialists? Sure you can’t know every disorder or illness off the top of your head, but this isn’t new. It’s been occurring more and more over the past few years. Again, I can understand not being overly familiar with Dysautonomia/POTS, but the immediate dismissal without even looking into the issue or using basic comprehension of how a condition such as these could impact an entire body in multiple systems blows my mind. Is it not a requirement for medical professionals to take continued education courses and keep up to date on evolving or rising issues within their field?
The amount of providers that would rather dismiss a patients concerns as “anxiety” WHICH IS SO HEAVILY REPORTED THAT IT HAS BEEN IN EVERY SINGLE RESEARCH PAPER I HAVE READ ON THE ISSUE or called their patients hypochondriacs (are we really hypochondriacs if we’re right?) is appalling. “There’s no cure so what’s the point” Just because there isn’t a cure or an exponential amount of info doesn’t mean it can’t be managed or be taken into account as a factor for issues down the line. And don’t think it is lost on me that the condition primarily affects women, especially young women, and we all know how the medical field feels about conditions that predominantly impact women. It’s disgusting.
We shouldn’t have to beg for professionals to believe us. We shouldn’t have to do their job for them with our own research. We shouldn’t have to get different opinions from varying other specialties. We shouldn’t have to pay to sit in offices and be told it’s just stress or anxiety or our weight or this or that or literally anything other than what we express to our providers. It shouldn’t be this hard.
Thank you for coming to my ted talk.