Kelly

My name is Kelly, and I’m 19 years old. I have had PoTS since I was 14.

However, I was dismissed with anxiety and wasn’t diagnosed until I began fainting regularly at 18. After seeing more doctors than I can count, I finally saw one incredible woman who performed an active stand test, and diagnosed me two months later.

Since then, a lot has changed. I had my driving license revoked, and I’m now a mobility aid user. But I’ve also had some really positive experiences, such as making new friends with chronic illnesses, and building an online community to raise awareness.

It feels strange now to think back on what my life was like before, as PoTS has now become such a huge part of my identity. Of course, it’s not all as easy as social media makes it look! A few months ago I was fainting in public, having presyncope episodes daily and feeling unwell almost all the time, all whilst working and studying and trying to live a normal student life. The hardest part was learning the skill of pacing, not being able to socialise and go out with my friends, knowing that they couldn’t understand what I was going through. 

Lifestyle changes such as electrolytes and compression socks had a huge impact; I had so much more energy and was able to get back to my daily activities. However, I was still fainting multiple times a week and faced changes to my position at work. At one point, I wasn’t even sure I’d be able to continue my studies. It was then that same wonderful doctor decided to start me on Propranolol, I’d heard some pretty awful stories from my friends, but it changed my life. Since starting medication, I haven’t fainted, I barely experience presyncope, and I feel as if I’ve got my life back. 

Now, I’m part of multiple projects to raise awareness and I’m using my experience and research to give help and support to others with my condition. In short, I’m becoming the person I wish I had been when I was experiencing debilitating symptoms and I felt like nobody wanted to help me. I want to remind other people going through this that there is always hope, and there is always someone who will be there for you. It’s a journey that continues long after diagnosis and it’s okay to grieve your old self, you will figure it out, and you will be okay. As for those who know nothing about PoTS, I ask you to listen to me as I listen to my body. You will never know my condition as well as I do, and you are not the one who has to deal with the consequences if I don’t put my health first.

I’m still a whole person outside of my condition. I still have hobbies and passions and this is just something that I have to live with. But it’s something that’s made me more resilient, compassionate and grateful. I’m proud of the person it’s forced me to become. In closing, I’d like to remind everyone to drink water, advocate for yourself and listen to your body!