POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME
BE YOUR OWN ADVOCATE
Postural Orthostatic Tachycardia Syndrome. These 4 words changed my life. I waited 2 years, to hear these 4 words. They became Validation. Validation that it wasn’t all in my head, that I wasn’t anxious, that I knew all along that something wasn’t right. If there is one piece of advice I can offer those that are seeking information about their condition, or think they may have POTS, be your own advocate. You know your body. You know what your normal is. Do not let professionals make you feel like you are crazy, or wrong. If you hit a wall with one doctor, try another one. Try different types of Doctors, or different cities if need be. I had a top Cardiologist tell me ” you are young, and healthy and fine” . After waiting months to get an appointment, I jumped up on the table and laid down, and he took my blood pressure. He sat me up and said yup, you are fine. BYE! I was shocked. I told him all my symptoms occurred when I was standing, or walking. Upright in general. When I laid down they went away. He did not listen to one word I said. He tested me in the position I felt fine in, and sent me on my way!
I was working as a paramedic at the time, I knew a lot about the cardiovascular system, and the body in general. I knew something wasn’t right. I even had a family doctor at the time who finally threw up his hands and said ” I don’t know what else you want me to do, I have sent you everywhere”. That was the day I left that family doctor and found one that listened, and cared about my health. With a fresh set of eyes, she started from the beginning. In the end, it was actually a random emergency doctor who treated me during a bad flare up one day who sat on my bed and listened. He looked me in the eyes, sat quietly , and he didn’t look like I was wasting his time. When I finished talking. He told me to stand up, and he took my heart rate and blood pressure. Then he told me to sit down and did the same. He wrote down on a piece of paper one thing…and that was an appointment for me to go the Autonomic clinic and see a specialist who deals with Postural Orthostatic Tachycardia Syndrome. And thus began my journey. I ran into that doctor a few times while I was still on the road as a paramedic, and I had tears well up in my eyes when I thanked him. I told him that he changed my life that day. It was that day that I started to find a way to control my illness because I finally had a name to it. And sometimes a name is all it takes to feel like it will all be ok.
~Everyone wants to be seen and heard~
I never forgot that doctor, and I used that method when dealing with my future patients, co-workers and even my children. Everyone wants to feel heard, and validated as Oprah says. There is no greater truth than that. I think if everyone just stopped talking and just listened more, we would solve a lot more issues in this world.