Sophie
Hello, my name is Sophie.
My PoTS journey began at the beginning of 2020, when I became unwell with viral tonsillitis. From that day, my life was never the same.
I started experiencing symptoms that were new to me, and that I hadn’t experienced before, but I originally put this down to the fact I had recently been unwell and was still recovering.
After many weeks, my symptoms didn’t improve and I contacted my GP. My parents mentioned to the GP that they suspected PoTS, but they were convinced I was a typical teenage girl experiencing anxiety (they even gave me a number for a therapist.) I knew however something wasn’t right, this wasn’t normal for me, and continued pushing them for more. After numerous referrals and endless amounts of testing, I received my PoTS diagnosis in May 2022.
I felt extremely lonely throughout this journey, as nobody could work out what was happening and felt that I couldn’t talk to anybody about it. All I wanted was to feel heard, and to feel better!
PoTS has affected my life in so many ways. It’s meant that all the day to day tasks that I shouldn’t have to think about, have become extremely demanding and I need help with things, like washing my hair in the shower. Medication is not an option for me, so I rely on drinking a lot of water and allowing myself to rest when I need to to avoid a flare up.
My biggest challenge with PoTS was definitely being at school. Unfortunately, they did not understand that my condition was invisible and affected me in ways they wouldn’t have been able to imagine. I lost a lot of friends, and was under immense stress due to a lack of adjustments being made. I spent a lot of time fighting to advocate for myself. However, despite all of this, I passed all of my GCSE’s, and my biggest achievement since has been being able to move onto college to study towards my dream career in backstage theatre.
My advice to anybody who is currently living with PoTS, anyone that may be struggling, is to remember that you are the only person who truly knows your body. Nobody can judge how you are feeling, they are not experiencing it and you are your own best advocate.
To anyone who may be worried about what their future holds, although your reality may look different to everyone else’s, you don’t have to give up on following your dreams. There is always a path to get to where you want to go, even if it is not exactly the same road as a healthy person. Accomodations are there for a reason, do not feel guilty about taking advantage of these if you need them! You can do it!
I believe it is important for everyone to know about PoTS, not just medical professionals. Having a shoulder to cry on, and people around you who make you feel valued as a person, can have a huge impact. Do some research, you don’t have to be an expert, it just means less unnecessary judgements towards those suffering with something very real.
I hope one day, research will find a method to alleviate symptoms and further improve the quality of life for PoTS sufferers, and also that one day, PoTS is even better known, all around the world – awareness is key!
Thank you for reading my story! 💜