Ellie

I’m Ellie, a 19-year-old student and I am ready to share my story with PoTS and ITS (Inappropriate Sinus Tachycardia) in the hope of spreading awareness and supporting others with chronic illness.

I was unfortunate enough to catch Covid-19 after New Year’s Day in 2022; at the time, I had no idea it could have a lot of long-term effect on a healthy girl like me. After getting the virus, things seemed to deteriorate, and I began to experience what was thought to be, long covid symptoms; extreme fatigue, racing heart, and dizzy spells resulting in me collapsing.

Doctors ran multiple tests, diagnosed me with Asthma, iron deficiency and high stress but my body told me otherwise. It wasn’t until I moved to university that things changed quickly, moving away is already seen as a big adjustment in life but a month in I found myself unresponsive in hospital with low bp and high heart rate and what could only describe as unbearable pain all over. It felt like nobody was listening and I wasn’t heard, several Bloods, ECGS, and blood pressure tests all kept coming back ‘normal’.

It wasn’t until summer of 2023 where I got to see a cardiologist, who gave me the assurance that he would help and pay interest to the way I was feeling. This restored my belief after being let down repeatedly.  My heart rate and blood pressure spiked to 130-140 and 165 BPM during further tests, and I was eventually diagnosed with PoTS and IST (Inappropriate Sinus Tachycardia).

I didn’t anticipate how much PoTS and IST would impact me or how many problems it would bring. I’m learning that no two days are the same and that everyone faces different signs and symptoms. I wish the symptoms would go away but daily I still suffer with tachycardia, temperature deregulation, presyncope, fainting and more.

Living with a chronic illness has been difficult; all the dark thoughts which have crossed my mind, the countless battles of trying to be heard, and the pain that runs through my body made it feel like a losing battle, but I wouldn’t have made it to where I am without the support of my family and friends surrounding me.

I’m extremely proud of myself and everyone else who have made it to the stage where everyone in our community feels safe to share our experiences in the hope to improve knowledge and raise awareness for what can be a life changing illness.