A Day in High School With Dysautonomia

Almost a year ago I was told I had postural orthostatic tachycardia syndrome (POTS), which is a form of dysautonomia. I was also told to eat five to six extra grams of salt a day. My main issues are stairs, walking and standing for an extended period of time. I’m also a junior in high school. Everyday I pack extra items to make sure I wont faint, fall or get sick. Compression socks, my heart rate app on my watch, and extra salty goldfish have become my best friends.

Explaining to my friends and teachers why I need an elevator pass and why I couldn’t stay in choir is extremely confusing to them and me. I look relatively healthy so I don’t blame them when they ask me to go to dances and the mall. I wish I could do those spur of the moment things, but for me, activities take a lot of planning – or else I pay later with purple feet and needing to lay down for quite a while. If I don’t plan things well enough or don’t take enough breaks to sit and rest, it feels like I’ve just run a marathon.

My day in high school with POTS roughly looks like this:

In the morning, before school, we stand outside for flag ceremony. Towards the end of it all, my watch alerts warn me that my heart rate has stayed or exceeded the 150s for an extended time, with no serious physical activity – but we are usually released to class before I desperately need to sit down. Throughout the school day I’m thinking to myself, “What are the best routes and options for getting to my next class or turning in an assignment?” I grip the walls and chairs as I walk by my classmates, just hoping that I can get to my seat in time.

When I’m sitting in lessons I have to remember to stretch my legs and sit with them on the chair so they don’t hurt later from the pressure of blood pooling. I have to remember to breathe well, pace myself, listen to my body and my teachers at the same time, which gets confusing – especially in chemistry. At the end of the day it is usually hot in classrooms, so I have to go to the nurse to get an ice pack so I don’t overheat and to keep my heart rate below 115. At 3 p.m., when its time to leave, I walk out to my car and sit for five to 10 minutes so I am alert and feeling safe to drive home.

I repeat this routine every day that I’m at school. High school is still enjoyable, even if I can’t go to a party or I have to leave early. My friends understand and accept my fight with dysautonomia. I’m still trying new medications and treatments to get my POTS more managed so that maybe one day I will dance at prom and walk across the stage at graduation without worrying about finding a chair. But even if I don’t, that’s OK with me. I’ll just keep my compression socks on till then.

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