Sarah

Hi! My name is Sarah, I’m 27 years old and I was diagnosed with PoTS shortly after I’d turned 15. I think it’s fair to say I’m one of the lucky ones when it came to my diagnosis.

I went to the doctors due to going dizzy, light headed and slight black outs. I was first tested for diabetes. However, after a 24 hour ECG and the dreaded tilt table test, it was clear I had PoTS.

For years my mum was saying it was happening because I ‘skipped breakfast’. It was only one day after I had a full english, went for a walk, then blacked out in the pouring rain that she thought “maybe it’s not because she’s not eating!” From then on, any long walk I did, you could bet I would drop to the floor!

 I’d say my biggest challenge with having PoTS is the constant having to explain to someone what it is, and that even though I don’t look sick, doesn’t mean I’m not. I find myself wondering, “do I say it’s a heart condition” or “maybe I’ll just tell them by body can’t keep up with itself” and occasionally “my heart and blood pressure just don’t get along!” 

I’ve only ever been on fludrocortisone, which for me helps massively! Along with daily salt tablets and vitamin drinks! 

Thankfully, I still manage to work whilst having PoTS, though I know many struggle. I work as a 1:1 teaching assistant in a primary school and I LOVE it! My workplace are so supportive and understanding over my condition. Many times when I’ve had a flare up they’ve been the first to tell me to go home, rest and not come back until I feel ready to. 

Due to PoTS, I developed severe anxiety, to the point I hate leaving the house alone in case I have a flare and I’m in a public place, where people wouldn’t know what to do. Even though I carry a medical alert card, it still terrifies me! I’ve found what does help is wearing my apple watch, it alerts me when my heart rate has gone too high, that way I can try and control when a flare is happening. 

I remember when I was only 16, I had gone to a football celebration in my local town with my best friend. We walked there and by the time the celebration started, you guessed it, black out! I woke up in the back of an ambulance, and my friend told me that people around me were saying how I was drunk! If only they knew. I missed the whole celebration due to the black out. 

If you, or someone you know is having symptoms similar to PoTS please be persistent with your GP, this condition is not known by many professionals. I am thankful that my GP’s daughter has PoTS, which led to me getting help much quicker, but unfortunately that’s not the case for everyone. 

My hope going forward with the PoTS community is that more professionals understand this condition, and support the people who have it effectively. It would also be a dream for people to know what the condition is, so that we don’t have to explain it every time someone asks!  And finally, I would like to advise anyone who’s living with or knows someone with PoTS to be kind and mindful. We are not lazy. We are not making excuses. We are not faking it. Our bodies are tired, we are in constant survival mode, if we could flick a switch to be ‘normal’ I’m sure many of us would.