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When People Don’t Believe My POTS Is Real

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What should have been a fun night at the fair turned into a nightmare for me when I was 17. I’m from a small rural town in Arkansas. It was the summer before my senior year, and in small towns, the county fair is as close to an amusement park as it gets. It comes once a year, and you save money for what seems like a lifetime to go. My friends and I crammed into my old pickup truck and headed to town.

I rode maybe two rides before I started to feel ill. I’d never fainted before, yet I felt faint. I’d never been in any way sickly. I wasn’t too skinny or overweight really; I was average. I had tan, glowing skin and my whole life was ahead of me. I sat down for the rest of the night and let everyone else have all the fun.

I didn’t think much of any of my symptoms until my right arm went numb on the way out of town. I told one of my friends that he might have to drive, which was a huge deal. No one was allowed to drive my truck, not to mention he didn’t have a license yet. I carried on driving until I started feeling a piercing pain in my chest. When I couldn’t breathe anymore, I did my best to pull over and give my friend the wheel.

It was nearly an hour drive, by the end of which I had lost all control of my body. I couldn’t speak or see and I was taking ragged breaths every few minutes. I was terrified on the inside. I could hear everything around me, but I couldn’t move or respond. I had to be carried in that night. I may have even been sent to the hospital, but it’s hard to remember.

A few weeks later, school started. I had felt fine for a while and figured I’d just had a bad reaction to the carnival rides. That was until I was once again rendered immobile in art class. No one noticed until the bell rang and I couldn’t get up from my seat to leave. My teacher became worried when my eyes were open, my mouth was moving, but I couldn’t utter a sound. He laid me out on the floor, cleared the room and called the nurse. During that time I went into convulsions. It took a long time to get ahold of my family, so long that they called the ambulance. When the nurse came, she couldn’t even count my heart rate. It was completely erratic and somewhere above the 200s. She scribbled everything she knew on a coloring page and sent it with me in the ambulance, but by the time I reached the hospital I was fine.

These episodes reoccurred so often that I could no longer attend school or leave the house. I had to have a babysitter, and I could no longer work. Imagine having a babysitter at 17!  It was such a mystery, but soon we learned that I had postural orthostatic tachycardia syndrome (POTS). It is estimated that between 1 and 3 million people in the U.S. have this disorder.

I’m learning to live with POTS, but it is an invisible illness. I look like any other person. However, life with POTS has been compared to living with congestive heart failure. I’m exercise intolerant, I need tons of water and salt in my diet and sometimes I’ll have seizures and near-fainting spells. I can’t exert myself too much, which has ruined my chances of working. I used to care for people with disabilities, but now I am disabled.

The hardest part has been accepting my new life. I’ve given up much of my independence and dreams. However, it’s also hard when people perceive my chronic fatigue as “laziness,” or tell me that if I would just exercise I’d feel better. I can tolerate about 10 minutes of walking at a time. I cannot run, jump or dance anymore without triggering an episode. While I would love to be able to forget my illness for just one day, I can’t. I’m constantly reminded by chest pains, shortness of breath and autonomic failure.

My dad has the same condition, but with milder symptoms. While walking can at times be unsafe for me, he just stays at home when he feels ill. I can’t stay in all the time, so I got a wheelchair to help on bad days. I weigh around 145 pounds and shouldn’t be carried. Even he said that I wouldn’t need it if I’d just “walk it off.”

Believe me, I wish it was that easy. It’s so hard to live in a small town where people talk. If you haven’t seen my episodes for yourself, you’d never know I was sick. People judge me because they don’t know what it’s like, even the people closest to me.

If I could say one thing about POTS, I’d simply say that it is real and serious. Some doctors don’t even believe it is a real disorder. I’m living proof along with thousands of others. I wish people understood that even on a good day, I’m not as “normal” as I look. It takes every bit of my energy just to hold my head up sometimes. I’m 20 years old, but sometimes I can’t answer simple questions. It’s not that I don’t understand, and I’m not “faking” my seizures. I’m in serious pain. Why on earth would anyone want to stumble and fall when they walk? Why would they want to kick and jerk all night rather than sleep? I don’t receive government assistance, and I’ve actually lost touch with friends, so it isn’t attention that I want. People need to know this disorder is a legitimate, disabling condition, not a cry for help.

In the past, I definitely would have had doubts if I saw a seemingly healthy person walking through town one day, then using a wheelchair the next. A fellow POTS patient I know is now basically bedridden, having upwards of 30 seizures a day. She’s only in her 40s. I may never reach that severity, but I’ll enjoy my abilities when I can. I’m terrified my community will judge me for that.

Getty image by J_art

Originally published: January 25, 2016
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