The Fear of Missing Out as a Teenager With Postural Orthostatic Tachycardia Syndrome
What is the hardest part of being chronically ill?
It’s not the doctors’ appointments (which by the way, I don’t even go to anymore). It’s not how hard it is to say postural orthostatic tachycardia syndrome (POTS) then explain it to a confused stranger. It’s not the constant nagging dizziness, although that ranks pretty high. It’s not how hard it is to get out of bed sometimes. It’s not even the months I got so weak I was homebound and I couldn’t go to school.
The hardest part of being chronically ill for me is feeling like I’ve let my inner little girl down. I can’t accomplish all the things I thought I could at 16. I was supposed to have it all together by now: running track, ranked top 10 in my class, going on dates and driving my car.
I started to feel sick around the time I was 9 years old. Since then, it’s only gotten worse. But, before that dreadful day when I had my first near-syncope spell, I had an incredible life.
Don’t get me wrong — my life is still incredible and I am forever grateful that I can function better than I could after my diagnosis in October. But, I do miss the days of being carefree, dreaming about who and what I would be in high school, and most important of all: feeling good! I honestly can’t comprehend anymore what “normal” feels like.
Even when I’m at school surrounded by all my peers, I still am very much aware that I am sick.
Some days when I feel the worst, I am so hard on myself. When I can’t run a mile like I used to or when I see a C on my report card because I was so behind on makeup work, I beat myself up about it. I am also utterly ashamed that I am 16 and just now getting my learner’s permit because I was too booked with doctor’s appointments to take it.
I feel like I have not only let my younger, hopeful self down, but my family and friends, too. But that’s not the truth, even when I insist that it is. We have to keep telling ourselves that being chronically ill is not a sign of our weakness, but of our strength.
I am resilient. I fight every hour of the day to keep living like a healthy person would. I have learned how to pretend I’m feeling better just to make people around me happier. I have tried to help as much as I can with those suffering with colds and minor tummy aches. When they complain, I earnestly pray they will feel better soon and never about the fact that I never will. I have mastered the art of chugging bottles of water, waking up at 6 every morning, and watching my carbs and sugar intake (thanks, hypoglycemia — because POTS isn’t hard enough). I can still get ready, put on my makeup and smile at school without telling anyone I cried myself to sleep because I felt so bad. I have this little internal battle I am winning every day and it’s just against myself. I can sit in class with my heart flying thinking I am about to pass out, and no one would ever know. You can say I know the expression “grin and bear it” like the back of my hand.
In this, I have learned that my suffering is unfair, but it is not the center of the world. I am still privileged to live, breathe, love, laugh and all the other beautiful things about living. Yes, life is so unfair. I wish by all means I was 16 and not chronically ill.
I wish I could be that perfect high school girl I thought I would be.
But I think my younger self would be proud if she could see all the ways I am a fighter. I think she would say “well done” at all the strength I draw out of myself every day and the new compassion I have for others suffering with chronic illnesses. I may not have been everything I thought I would be, but maybe, just maybe, I am even more.
Plus, I probably wouldn’t have found this great Elizabeth Taylor quote if it wasn’t for my diagnosis!
“You just do it. You force yourself to get up. You force yourself to put one foot in front of the other and you refuse to let it get to you. You fight. You cry. You curse. Then you go about the business of living. That’s how I’ve done it. There is no other way.”
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.