Katie
My name is Katie, I’m 23 years old and to be honest I don’t really know when my struggle with PoTS truly began. Just like the other conditions I have alongside PoTS (HEDS, Fibromyalgia), it sometimes feels like a storm cloud that has gathered above my head over time and has never left. I know that I was really young when it hit, barely out of primary school.
I was going through a really hard time with my health already and the symptoms I experience now and was experiencing then with PoTS such as heart racing, nausea, dizziness and even fainting, were dismissed as anxiety or even as not existing whatsoever. I also remember one doctor saying my “tachycardia episodes” highlighted on my 24-hour ECG was because I was a teenage girl.
My diagnosis didn’t come until 2019 when I had left my hometown and was being seen under a different hospital. I had mentioned to my rheumatologist that I often hurt myself when I passed out and he made sure I was seen by a cardiologist at the same hospital. Several heart monitors, ECG’s, echocardiogram and tilt table tests later and I had my answer.
It was a relief; I knew what was causing it and I do think that’s half of the battle of learning to live with what can be an extremely debilitating condition. I also felt validated. When you’re told so many times that there’s nothing wrong, that it’s all in your head, you begin to convince yourself that you’re going crazy.
Medication, pacing, and gentle exercise
I’m currently managing my condition as best as I can with a mixture of medication, pacing and as much gentle exercise (such as walking) as my body will allow. It’s definitely a balancing act, sometimes you feel as if you always have to sacrifice something. Sometimes it’s about putting your mental health over physical and other times, it’s the opposite. It can often end up in a vicious cycle and that’s pretty hard to get out of.
For me, what can be just as tough as the awful symptoms you face, is the isolation it brings. Nobody can really understand what you are facing and life goes on, whether your body will allow you to be a part of it or not.
What’s equally as difficult, especially being so young, is that it’s an invisible illness. Some people won’t consider looking beyond what they can see and as someone who looks young and healthy, there’s a lot of ignorance and stigma that comes with that.
It does get easier and now some days I even feel the sunshine breaking through those dark clouds.
The best advice I could give to anyone with POTS would be
- Life can be very tough with an invisible illness. Some people won’t consider looking behind what they can see but you can look very healthy, young and happy and still struggle. Just because others refuse to see your struggle, it doesn’t make it any less valid.
- You have to learn to say no. It’s not easy and doesn’t always feel great but it is key.