Having CPVT is Isolating
I experienced sudden cardiac arrest as a 13 year old, still in 7th grade. I spent a week in the hospital and left with a pacemaker, then I came back 2/3 months later, getting diagnosed with CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia). I already felt so out of place amongst my peers because of everything I had going on, but then I had to add a heart condition and a pacemaker on top of that. Even when I managed to find other teenagers with pacemakers online, I still have a rare condition that no one relates to. I grew up feeling out of place because of a chronic illness (asthma), but now it’s so much worse knowing I can’t even relate to people within these communities. It’s so exhausting trying to talk about my disability because it’s just a reminder of how I’ll never get to be a normal teenager. I’m so sick of hearing “My grandparent has a pacemaker”, “Wow, you’re really young”, “How did it feel being dead?”, “I bet the pacemaker feels really weird”, “So you can’t do ___ ?”, “You’re so lucky that you get to have your phone in school”, and so much more. I just want to talk about CPVT without needing to give an entire prologue. I want to know another teenager with CPVT so we can rant about it in the same way we rant about common experiences.
If you have CPVT please don’t hesitate to reach out, and if you know how to find other people with CPVT, please share.