Dysautonomia | POTS

Imagine trying to get out of bed one day, and not being able to. You try to
stand up, only to fall down and get wedged between your bed and bedside
table. You try to sit up, but even that is enough to make you fall back down.
Your vision starts going black. You have a pounding headache. You have to
get the paramedics to rescue you. At the hospital, you are diagnosed with
low iron and sent home, before the results are back. Your iron levels come
back perfectly normal. The extent of your existence is essentially being bedbound.

This is the reality for over 200,000 people, including myself, who have
Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of
Dysautonomia (nervous system malfunction). The average diagnosis time is
seven years. Seven years of crawling around the house, being able to do just
about nothing. Seven years of life wasted away.

For me, I was lucky. I was diagnosed within a few weeks. For me, the trigger
was a Covid infection. Mine is a form of Long Covid. I was just twelve years
old when this happened to me. That hasn’t stopped the medical gaslighting.
I have been told a whole range of things from a whole range of doctors who
have no idea. Some admit that they have no idea, others don’t. Some do
have an idea, but not enough of an idea. I’ve been called ‘lazy’, told that I’m
‘perfectly healthy’, despite the test results clearly saying otherwise. I’ve had
three ‘specialists’ move to Queensland. I’ve seen doctors at four different
hospitals. Some have helped. I am now able to function normally, at least at
first glance. Don’t count the seven falls that I have had in the past week.

I’ve decided to tell my traumatic story so that society can understand just
how harrowing my condition is. Many studies have rated our quality of life
lower than that of someone with cancer. With International Heart Health
day on the 29th of September, it is a timely reminder to make the most of
your heart whilst you still can. You might be the next person to develop
POTS. So go on that hike I know you want to do.
It is also a timely reminder to learn about heart conditions that are present
in our community, and stop judging each other for them..