Dotty
My name is Dotty, and I’m 18 years old.
My PoTS journey started at the end of 2019, when I was 13 years old. I’d had a rough day at school and wanted to go to the park to unwind – that’s when I was hit by a car. What we didn’t know was that the whiplash and trauma to my nervous system would have a life changing impact on my health.
I started struggling to walk and stand without my heart racing, which we just attributed to anxiety and being post-concussion, but my struggles just didn’t do away with passing time! I started collapsing frequently, with falls and faints becoming part of my daily routine, it became a matter of ‘how many times will I collapse today’ rather than ‘will I’ – it was clear something wasn’t right.
A memory that sticks with me is going for a walk with my family in late 2020 and collapsing after just 5 minutes of walking. After measuring my heart rate, it was in the late hundreds. This was a warning sign that something was going on, we just didn’t know what.
It was in January 2021 that my mum first heard about PoTS, as a friend of hers has it. All of the symptoms lined up – the collapsing, the fatigue, the heart rate, the dizziness – and we started looking into it more and more.
It took me 3 years to be diagnosed following that. I was dismissed and told that what I was feeling was normal for teenage girls, a result of my periods, poor diet, anxiety, lack of exercise, and countless other things. When I finally got a hospital appointment, it was cancelled. I was the offered another one, which again was cancelled, this happened 3 more times!
Eventually I had to go private, which was a financial stressor but necessary with how much I was struggling.
I had a tilt table test as well as an exercise test. The tilt table showed that my heart rate was at 140bpm after just 10 minutes of being upright. Even after seeing that, the nurse conducting the test shook her head and told me it wasn’t PoTS, handed me a leaflet about fainting, and sent me on my way. This shows the lack of knowledge about PoTS, and how desperately it’s needed for people like me.
I remember the two doctors making a huge fuss over me after the exercise test because of my heart rate and irregular breathing, but being confused because what I was feeling was just my normal. This opened my eyes to just how serious the situation was.
5 months later, at 17, I got my official diagnosis from a cardiologist. It felt like my world had changed and came with a lot of mixed emotions.
My symptoms vary day to day, but are always there, no matter what face I put on. Every day I face severe fatigue, pain in my chest and joints, headaches, nausea, blood pooling, breathing problems, and more.
Some days I am able to get up, go on walks and trips out with friends, and other days I’m bed-bound. I often have to use a wheelchair, which was scary at first but makes an unbelievable difference in managing my symptoms and enjoying life alongside them.
If you have a friend with PoTS, it’s important to know that our condition doesn’t go away when we’re not talking about it. It’s called a chronic illness for a reason – even though symptoms can vary, they are always there. Being caring and respectful everyday, not just when we’re at our worst, means more to us than you know.
And finally, to anyone else my age who has PoTS – I get it. I understand the uncertainty, the sadness and the frustration that comes with holding this weight at what everyone says is the prime of your life. The pain of watching everyone else your age having experiences and opportunities you feel like you’ll never have. But I want you to know that you deserve to and will live life regardless – it just might look different to what you wanted or expected, and that’s ok.
I’m 19 this year, and I don’t know what the future holds for me, or how PoTS will impact me as I get older. But I do know that I deserve happiness, success, and a good life – and so do you.