Emily
My name is Emily and I am 24 years old from Kent.
I was diagnosed with PoTS in November 2024. I believe my PoTS was caused by numerous Covid infections, so alongside my diagnosis of PoTS, I was also supported by a Long Covid Clinic.
Looking back I experienced fatigue for a long time, but this massively took a turn for the worse in August/September of 2024 – after a Covid infection. I highlighted this on multiple occasions to my GP, and unable to get a face to face appointment, the suggestion on the phone was to start an antidepressant that is used for those with narcolepsy! I declined this, knowing this would not change the root cause.
My health continued to deteriorate, and I was constantly having to fight my corner in order to be listened to. Again, I couldn’t get a GP appointment, so I had to pay to go to a private GP – here she noted that my oxygen levels (spo2) dropped on exertion.
I progressively got worse – mind fog, intense fatigue, chest pain and breathlessness. I can remember standing at work, zoning out, feeling like I was going to faint. I had to stop playing hockey, a sport I played for 15+ years, as I had no physiological reserve at all.
At the time, I was working as a Physiotherapist on ICU, so I had no choice but to channel all of my energy into my job, getting through the day, and then coming home and collapsing into a heap and sleeping as soon as I got in the door.
I spent 2 days in A+E where they completed blood tests, chest x-ray and a CTPA to check for a blood clot. They noted that my oxygen levels dropped to 71% on exertion, and yet, just sent me home with no answers. I then spent 3 weeks off work, exhausted and not leaving the house, the chest pain, palpitations still very much there, and my oxygen levels continuing to drop on exertion.
As I didn’t receive a follow up from the hospital, I had no choice but to go private again. I had an Echo, which was normal, and a 24 hour ECG, showing around 40 ectopic beats. They then decided to send me for a Cardiac MRI and Tilt Table Test. The Tilt Table was indicative of PoTS – I had a raise in my heart rate from lying to standing of over 30bpm and also had random plummeting of blood pressure (to what felt like my boots!) when standing for over 10 minutes (this was not the most enjoyable experience!)
After my diagnosis, I pushed through everyday and worked another 6 months at my job. But unfortunately, my dream job I worked so hard for, and I loved, was unable to help me to reduce my hours, or accommodate flexible working. Disheartened, I had no choice but to hand in my notice. This was probably the hardest decision I ever made, leaving behind the job I always wanted, and to be ‘jobless’ when I felt my career was only just beginning. I had just reached the point where I could really see my skills and knowledge as a Physio improving everyday.
I was always on the go – working, socialising, and playing sport, and to an extent, I still push through that now so lots of people think there’s nothing wrong with me. Learning to cope with these new symptoms has been extremely difficult, I really have struggled to slow down and accept the good and the bad days. Some days I feel normal and I can go and play hockey (although I am very aware of my limits), but this often results in the following day being a complete write off. On other days I can barely move off the sofa, or walk up the stairs, and it’s hard not to feel really demoralised, or beat myself up about it.
Very few people are aware of what PoTS is. I hope with more research, and discussions – especially now with the wider understanding of Long Covid, more people will be aware of how debilitating it can be. It isn’t just a ‘made up’ illness and there shouldn’t be any stigma around it. People need to be taken seriously and shouldn’t have to fight to be heard, or have to pay for private consultants, in order to get the help and diagnosis that is deserved.
I would like to share my story to spread awareness and to show that even with a diagnosis of PoTS, I won’t let it affect my life completely. I am going to take time to rest and recover, but also travel and prioritise myself. I know that one day I will get another job as a Physiotherapist, and I will continue to advance my knowledge and advocate for this misunderstood and misdiagnosed condition.