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My POTS Progression over a Decade

Katie, age 28, New York

I grew up thinking I was weaker than normal people because I couldn't keep a thought in my head, always needed a nap, and physically didn't have any stamina. And I was embarrassed that it took me ten times longer to be able to perfect a skill, whether it was schoolwork or a gymnastics move. I'd spend hours in my basement training myself. I spent hours sitting in splits while doing my homework. In my teens I learned the magic of caffeine, and by high school, I was having Diet Mountain Dew for breakfast, lunch, and dinner. My heart was always beating so fast I could hear my pulse in my ears. I always felt dizzy and weak. I was always sick with a cold. I popped Advil like candy as soon as I hit puberty. I was taught that showing pain equaled weakness so I kept the pain to myself.

I worked so hard to act normal. Still, others noticed my shortcomings. My 5th grade teacher called me “The Bathroom Lady” in front of my class because I constantly had to use the restroom. What my teacher and classmates didn’t know was that my thirst for water was insatiable, and also I felt like if I didn’t get up and move every 20-30 minutes, that I would fall asleep on my desk. I couldn’t concentrate in class after the first 10 minutes of sitting still. In high school, my cheerleading team lovingly called me the “Southerner” because I was very slow to learn a routine or remember things. However I would practice so hard that by the time I finally got a routine down, I’d be at the point of almost every formation. And when things did happen like falling down, tripping, walking into walls, etc. I'd say how clumsy I was and laugh it off. When I passed out, I'd always be like sorry, my fault, I didn't eat a good breakfast or that I must have partied too much the night before. The truth was I never miss breakfast. I honestly thought everyone felt the way I did in their bodies but I was just not as strong as other people.

Despite doing gymnastics, cheerleading, coaching, school work (which I always did laying down), being in a sorority, being a nursing supervisor, etc... I am telling you some of the hardest times for me was when I had to put on the brave face during family events. I dreaded them. Standing around talking to people, eating a big meal, and then trying to be sociable and clean up after the gathering was excruciating. My parents thought I was lazy. I constantly felt like I let my family down.

Throughout my life, my siblings thought I was faking when I got sick all the time. My friends thought I was skipping school. Doctors told me I had anxiety and depression. I was sent to a shrink and they'd discharge me the next day. No matter what I did, my conclusion was that I just needed to buck up and be like everyone else. I never EVER felt good enough.

I want to encourage you all to fight, but learn your limits. I want you to find a support system. It's so important. And most of all, I want you to know that you're not alone. And if anyone or anything is hindering you in your life, like a crappy doctor or a judgmental friend....drop them like a bad habit. This is your life we're talking about. You have to learn how to cope with and overcome stressors in your life so they don't physically ruin you. And you have to learn how to live your life to fullest extent that you can...and not beat yourself up when you can't do certain things.

Also just so you know...because I did fight (but didn't know my limits), I was able to be the captain of my cheer team in high school, did college cheer, was a competitive gymnast, coached gymnastics, joined a sorority, and got my bachelors in nursing. I was the supervisor for several units on night shift and was a good nurse. The key part of that statement is that it is all past tense. Because I didn't know I had POTS, I didn't know my limits AT ALL and it got me in serious trouble too many times.

Then starting in 2010, I ended up getting in a series of 5 car incidents in 2 years. Now I'm unable to hold down a job, and had to move 6 hours back home. If I had known....I wouldn't have gone to work the night of my first accident.  I wouldn't have smiled through my shift with tears running down my face.  I was in so much pain but I had to put that aside and do my job. And every accident, I did the same thing. Needless to say, I ended up bedridden and finally diagnosed after fighting tooth and nail for answers. And when I got diagnosed, everyone at work thought it was a BS diagnosis because NONE of us had ever heard of it. My boss told me to get my anxiety under control. I had no support. I was living alone. I fell down my stairs so many times and just writhed in pain, alone. Eventually I had to crawl to my cell, but I was too proud to call my friends and ask for help. I didn't want help. And I didn't want anyone to know I had this condition.

I didn’t want anyone to see me weak. I’d gone to extensive lengths most my life to hide the fact that my body was weak. My friends called me a gym rat. I was terrified of not being in shape because I knew how bad all my symptoms would get if I missed just one workout. And with every cold, injury, etc. it was getting next to impossible to recover. It finally got to the point where the chronic pain and POTS completely took over. I was always trying to overcompensate. After the diagnosis, I tried my old tricks to beat this before anyone knew anything. But the charade is finally over. My body is weak. Some days, rolling over in bed is hard. Having a conversation is hard. No part of my body is exempt from the effects of POTS. My body is weak but my soul cannot be touched.

God grant me the serenity to accept the things I cannot change, the courage to accept the things I can, and the wisdom to know the difference. So again, please let my mistakes help you to make the most out of your life. And know that I'm here to help in any way I can.

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