Fern

I’m Fern and I’m 21 years old. I’m here to tell my story about PoTS and how my life has changed because of it.

Before I developed PoTS, I was quite your usual “party girl”. I was a university student, I was always out having fun and living student life!

That was until I started experiencing severe pains in my joints, which turned out to be suspected hyper-mobility syndrome, I’m still in the process of being diagnosed for this.

The pains in my joints then developed further into something very different. I started experiencing heart palpitations every day, chest pains, becoming out of breath. I couldn’t stand unsupported for longer than 10 minutes at a time. Even the smallest of tasks were extremely difficult. So I decided to go back to my GP. I had numerous tests done, but nobody had any answers. My ECG was “normal”, X-rays, monitor’s, everything was “normal”. I felt like I was going insane, I was often told it was all in my head, that there was nothing wrong with me.

It wasn’t until I took an emergency visit to hospital with severe chest pain where PoTS was suspected, after a year of experiencing symptoms.  I was then referred to a specialist for a tilt table test. On the day of my test, they didn’t even need to get me on the table to see that my heart rate met the criteria for PoTS by standing and sitting. It was explained to me that hyper mobility syndrome and PoTS do in fact go hand in hand!

Although I am so glad to finally have an explanation and diagnosis for what I experience, I very much grieve the loss of the person I was before PoTS, the life I had and what I was able to do. But I don’t let it stop me! I find that a lot of acceptance is needed to realise that you haven’t lost your life, you are just beginning a new one which is different to what you have ever known, but it’s about adapting to change.

I am soon to start medication and management for PoTS, in hope that I will be able to gain more independence. I am due to finish my degree this year, I’m very determined to not let my pots get in the way, despite my poor attendance.

If I had a message for anyone who has PoTS, just been diagnosed or if you are feeling hopeless – just know that it’s going to be okay, you need to be patient with your body and take your time. Your life is certainly going to be different, but it’s NOT over! I have started talking about my experience with PoTS and providing support over on my social media platforms to gain more awareness. There is a great community out there!