Amie
I got diagnosed at the age of 9 and I am now 15. I’m sharing my story to show the effects growing up with PoTS can have on a person in the hope that someone can relate. Although I don’t remember much about the process of getting diagnosed, I remember constantly being in the hospital with my parents at a very young age, having countless amounts of tests done and never fully understanding what was happening to me.
Growing up with PoTS, I had to miss out on a lot of things, I wasn’t able to go to certain birthday parties, I missed out on certain activities and I had to watch my friends do things I couldn’t. I also went years without doing PE and when I started to do it again, I soon had to stop due to PoTS. I am now in year 10 of school and in a couple of months, I’ll be going in to year 11 (my last year of school). I’ve found that all the time I’ve missed due to flare ups and appointments has majorly affected my grades. Trying to make up for missed lesson time now is even more stressful. As l have exams, I’m coming into school when my heartrate gets to 170 or higher and I’ve never been so fatigued – it’s extremely hard to keep focused on my studies.
Unlike most PoTS patients, along with fainting, I also have seizures. Even though I have been having these for several years, my GP and I are still unsure as to why I have these seizures. We don’t know whether it’s down to PoTS, or if it’s another illness that we are unaware of.
Join a support group
If you do have PoTS and you haven’t already, I’d highly suggest joining a support group – I’m in one on Facebook and Instagram. The Instagram group especially, is extremely helpful. I’ve met several people going through the same thing as me and it was a huge relief as I hadn’t spoken to anyone that could relate before. I even met someone that I’m close in age with. It really helps to know that there’s always someone to talk to and understand what you’re going through on a different level than friends and family.
My advice to anyone in a similar situation to mine is:
- Take the time off school if necessary
- Make sure your school and the people around you know about your situation and know how to help you
- Make sure that you are surrounded by good people that will support you and understand that you can’t help or prevent how you feel