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Today I want to talk about my journey with POTS. ⁣🧂
⁣
I was first diagnosed in early 2016, after experiencing a traumatic health decline. My mother also has POTS, so for me, it was not as hard as it was for her to find what was wrong. For her, and many others 10+ years for a diagnosis. But, because she lives with it, she was able to see my symptoms and take me to a cardiologist.⁣
⁣
I remember when she first told me she thinks I may have POTS too. I was in serious denial. I saw how it ruined her life and I was so scared. I cried for weeks. I wanted nothing to do with it - in fact, I didn’t even want to know if I had it.⁣
⁣
Despite my denial, eventually, I was diagnosed at the Cleveland Clinic. I was still in high school, so I was really scared people would find out I was sick. I didn’t talk about it for a long time. A few friends sort of knew I had it, but they didn’t know really the depths of it and how hard it was to live this “double life”. ⁣
⁣
I was sick all the time, in constant pain. I was weak, fatigued, constant chest pain and trouble breathing. High school was really hard for me. But because of my own internalized stigma, I made it harder on myself by hiding what I was going through.⁣
⁣
For a few years I had no idea that there were other people with POTs. I had my mom, my family with hereditary dysautonomia, and a close family friend with it. But otherwise, I never realized there was this big community of people living with what I was. It wasn’t until a little over a year ago I really started being open and trying to educate others about my reality. While it was too late for my “high school experience”, it allowed me to strengthen myself “in the dark”, so I could eventually accept my life and work towards getting better.⁣
⁣
Through three(!) POTS diagnosis’s, tilt tables, heart monitors - the works, I finally am in a place where I have a team of doctors willing to understand and wanting to get me better. After many years of suffering in silence, I am doing treatment the best I can. ⁣
[Continued in comments] 💛👇🏼

Today I want to talk about my journey with POTS. ⁣🧂 ⁣ I was first diagnosed in early 2016, after experiencing a traumatic health decline. My mother also has POTS, so for me, it was not as hard as it was for her to find what was wrong. For her, and many others 10+ years for a diagnosis. But, because she lives with it, she was able to see my symptoms and take me to a cardiologist.⁣ ⁣ I remember when she first told me she thinks I may have POTS too. I was in serious denial. I saw how it ruined her life and I was so scared. I cried for weeks. I wanted nothing to do with it - in fact, I didn’t even want to know if I had it.⁣ ⁣ Despite my denial, eventually, I was diagnosed at the Cleveland Clinic. I was still in high school, so I was really scared people would find out I was sick. I didn’t talk about it for a long time. A few friends sort of knew I had it, but they didn’t know really the depths of it and how hard it was to live this “double life”. ⁣ ⁣ I was sick all the time, in constant pain. I was weak, fatigued, constant chest pain and trouble breathing. High school was really hard for me. But because of my own internalized stigma, I made it harder on myself by hiding what I was going through.⁣ ⁣ For a few years I had no idea that there were other people with POTs. I had my mom, my family with hereditary dysautonomia, and a close family friend with it. But otherwise, I never realized there was this big community of people living with what I was. It wasn’t until a little over a year ago I really started being open and trying to educate others about my reality. While it was too late for my “high school experience”, it allowed me to strengthen myself “in the dark”, so I could eventually accept my life and work towards getting better.⁣ ⁣ Through three(!) POTS diagnosis’s, tilt tables, heart monitors - the works, I finally am in a place where I have a team of doctors willing to understand and wanting to get me better. After many years of suffering in silence, I am doing treatment the best I can. ⁣ [Continued in comments] 💛👇🏼

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