A Decade of Living with POTS

I was diagnosed with POTS ten years ago when I was in high school. I was in and out of doctor’s offices for about a year and tested for everything from brain cancer to leukemia to lupus before I was finally diagnosed with POTS. I was missing so much school that most of my family and some of my doctors thought I was faking illness to get attention. What they didn’t know was that I was sick to my stomach every morning and I had severe “brain fog” - it felt like I was watching my life through a camera lens. Sometimes I would feel so disconnected I felt like they were speaking a different language. Standing made me feel nauseous and my feet and legs turn purple.  I would get these prickly, crawling feelings in my scalp, hands and arms.  My memory started to deteriorate, and sometimes I would wake up terrified because I couldn’t figure out what day it was or what I had done the day before. I slept for 18 hours a day but was still exhausted. I became extremely thin and my hair was falling out. The neurologist told me to try to live “as normal a life as possible” but that I would never be able to function like a normal person. 

The worst part was seeing my life completely deteriorate.  I went from being in honors and AP classes to dropping out of high school and getting my GED. I had been a competitive horseback rider, training a couple of hours every day to not being able to make it through a half hour lesson. I couldn’t talk about horses or even look at old pictures for years without tearing up. Once I was out of school, many of my friends stopped calling. My remaining friends would get upset when I had to cancel plans because the idea of leaving the house sounded like torture. I lost years of my life to POTS.

 Eventually, the symptoms started to wane. I learned I would have periods of relapse and remission. I have a hard time keeping a job and worry constantly about my future. I’ve been fired for “having too many health problems,” and been told that “I need to sort them out if I expect to keep a job.” There are still people around me who believe I have been faking for the last ten years. There are still days where I feel immense anxiety, depression and guilt that I am not functioning as a normal member of society. The people who call me “lazy” have no idea how badly I would love to wake up early, have a busy day at a full time job, run errands, then come home to cook and clean. My hope is to just get through each day.