Lexi

My name is Lexi, I am 14 years old and I live in the UK. I was officially diagnosed with PoTS a month ago, but looking back, I realise I have been quietly fighting this battle and feeling awful for the past two years. I just thought it was my low iron but it turned out to be both.

For a long time, I didn’t know what was wrong with me. I felt constantly worn out, weak and unwell. I was dealing with dizziness, racing heart rates, shaking and heavy presyncope. I had that frightening feeling that I might black out, even though I don’t actually faint. There have been so many moments where I’ve had to stop what I’m doing because my body simply wouldn’t cooperate.

Getting my diagnosis was a massive shock. On one hand, it was a relief to finally have an explanation for what I’d been experiencing. On the other hand, realising that so many difficult days over the past two years may have been caused by unmanaged PoTS was overwhelming. It made me look back at so many experiences differently.

One of the hardest things for me is how unpredictable it can be. Sometimes I can feel relatively okay and then suddenly become dizzy, weak, shaky or feel like my heart is racing. Standing for too long can become exhausting, and things that seem completely normal to other people can take a huge amount of effort for me.

Heat has been particularly difficult. During hot weather, my symptoms can become much harder to manage. Recently, I was so overheated during the night that even having two fans running didn’t seem to help. I woke up feeling extremely hot and weak, with a horrible headache and nausea. It can be frightening when your body feels like it isn’t coping with something as simple as temperature.

School is another huge challenge. PoTS is invisible, so from the outside I can look completely fine. People don’t always understand why I need to sit down, why standing can make me feel awful, or why I sometimes need to take things more slowly. I’ve even had people laugh when I’ve struggled with standing or dizziness. It hurts because I’m not choosing to struggle — I’m trying my best to get through the day.

Being 14 and having to think about symptoms, hydration, heat, dizziness and tiredness 24/7, while constantly wondering whether my body is going to cooperate that day, can feel incredibly overwhelming. I want to be able to enjoy being a teenager without constantly worrying about whether I’m going to feel unwell.

I am sharing my story because I believe schools and other young people need much more awareness of PoTS. Just because someone looks healthy doesn’t mean they’re feeling healthy. Sometimes sitting down, taking a break or needing extra support isn’t laziness, it’s someone trying to manage a real condition.

I hope that by sharing my experience, I can help other teenagers with PoTS feel less alone and help people understand just how real and debilitating this condition can be. Most importantly, I hope other young people don’t have to spend years wondering why they feel so unwell before someone finally listens and gives them an answer.