Elsie
Hello, my name is Elsie.
I may seem like your typical teenager but that’s not quite how it is!
Not being believed…
I started getting heart palpitations at 12, but the medics just didn’t believe me, they said teenagers didn’t get heartburn or palpitations unless they were pregnant, but that definitely was not the case!
They ran loads of tests ranging from urine and bloods, to a 72 hour ECG. This showed low iron levels and a few irregular heartbeats but nothing completely out of the normal. They also said I had asthma and gave me a blue inhaler.
Covid 19
Then Covid-19 hit at the worst possible time! The asthma nurse didn’t see me until 3 years later and they stopped all testing on me, saying I was suffering from anxiety. After Covid I started losing a lot of hair, I had really thick hair that was just getting thinner, this was not normal for me and had never happened before; I was losing a handful or 2 a day! They ran blood tests and again said I had really low iron levels, so prescribed all sorts of different medication.
PoTS is not a real condition…
When I raised the possibility that I might have PoTS and they said it wasn’t real and was made up!! I made a complaint to PALS NHS and they actually listened to me and all of my worries and they helped me talk to the right people.
Finally they listened to me
I kept telling my doctor that I had suffered from fainting episodes in high school, dizziness in secondary school and memory loss and brain fog in college and night sweats from the age of 15. I was forgetting my sentences and not remembering things I had done that day which was very unlike me, as a child I had a brilliant memory I could tell anyone what I had done on my holiday years ago. Finally, my doctor listened to me and agreed to run some more tests, admitting that it could be PoTS. After years of fighting, I was finally diagnosed and given medication to help me!
Raising awareness
I really hope I can use my Instagram to spread awareness about PoTS and other chronic illnesses. It is never okay to be called a liar, I know my body and how I feel! All I wanted was for someone to listen to me and diagnose my condition so I could receive the help I needed.