Ellie
My name is Ellie; I am 21 years old and from Felixstowe. I was diagnosed with PoTS in November 2022, and I never anticipated how much it would affect me and my life.
I was unfortunate enough to catch Covid-19 in January 2022, even though at the time I was a healthy, young girl. A couple of months later, I experienced waves of fatigue, shortness of breath and rapid heart palpitations which led me to speak to a doctor. They ran tests and informed me it was asthma caused by Covid as well as high stress levels which became hard to believe when my symptoms only deteriorated.
It wasn’t until September 2022, when I moved away to university, that my symptoms became worse. I was fainting several times a day, having dizzy spells, chronic migraines, pre-syncope, tonic-clonic seizures and more.
I spent several days in and out of A&E when I should’ve been out living the ‘uni life’ and making memories. I had endless blood tests, chest x-rays, Echocardiogram’s, and ECG’s all coming back ‘normal.’ The NHS waitlist was over a year long, so I was left with no choice but to go private and find out what was wrong with me.
The private specialist did a 24-hour blood pressure reading and heart monitoring which showed a significant increase in my heart rate and drop in BP. I was then prescribed my first set of medications to try and waited for my NHS appointment in the autumn, which is when I had a Tilt Table Test and a further heart monitor. The Tilt Table Test further supported the PoTS diagnosis as I had a quick raise in my heart rate from lying to standing of over 40bpm, reaching highs of 180bpm.
When I got my diagnosis in 2022, doctors were unsure if I would be able to complete my studies. The dream that I’d been working so hard for was being questioned, and my life had been turned upside-down. I worked whenever I could, catching up on missed work or assignments. I was determined to reach my dreams. Watching my life fade away whilst being miles away from home and family made it easily the hardest few years I have had yet. However, it also taught me so much about the person I am – resilient, determined, confident and still smiling, despite everything.
Learning to cope with my new ‘normal’ life and daily symptoms has been difficult. Knowing one day I can do lots but the next day I’m not able to move from the sofa makes it harder to not feel disheartened. This condition might have given me three of the hardest years yet, but I can now say I have graduated from the University of Derby with a first-class degree. Something I never thought I would say or achieve. I can also say I was lucky enough to see Taylor Swift in concert summer 2024, something I was unsure would happen due to my health. But I proved I can do anything, and the future is bright.
I hope sharing my story will further spread awareness and encourage others to still fight for those dreams, even with a condition like PoTS. It is a life changing illness that affects so many people in different ways.
You are not defined by your illness; you are not a burden or at fault for your pain. You are carrying more than you ever should and that is powerful. Don’t give up this fight.