Some days, I live; some days, I thrive; some days, I survive.

What were you feeling the morning of your A levels? The morning when you were set to receive your university acceptance. Were you nervous, scared, excited? I was all 3 because I was scared I would die before I could attend my first lecture. I knew that if I did die, it wouldn’t be quick or without suffering; it would be long and drawn out, painful and cruel. However, no matter how sick I was, I went in to take my exams. Even if it meant me stumbling out of the exam hall and promptly passing out, if it meant my writing was smudged because my hand wouldn’t stop shaking, even if I had to run to the bathroom to be sick and then return to finish the paper.

I envied healthy people, and honestly, I still do. I will never know what it’s like not to be scared of flu season or not to have consumed fortisip. During the time of my A levels, I had lost 3 stone in 2 months and couldn’t keep food down; I looked like a walking ghost and felt like one, too.

Living with PoTS and dysautonomia feels like a death sentence; you wake up, become sick, feel tired, faint, get a migraine, not be able to focus, not be able to eat, feel like you have a heart attack, go to sleep and do it all over again the next day. Rinse and repeat. And the worst part is that the illness is so unknown whilst also having such a high rate of comorbidities; when you say the word PoTS, people don’t think of this illness; they think of kitchen utensils.

When you’re told at 17 that you have a heart murmur as well as another cardiac illness, which is also classed as a dysautonomic disease, meaning your immune system is compromised, your world stops for a minute. You think of the future you had been planning for and working for, and suddenly things make sense. All those times you had fainted but been told it was just ‘women’s problems’, every time you had to spin in ballet class and would see fuzzy black spots, why your heart felt like it was beating out of your chest after simply walking up steps.

From 17-18, I survived; I didn’t feel like I was living but simply that I was there; having to explain it to other people is problematic as it’s a unique feeling to be living but feel like you’re dying, to be trying to get better but knowing that you never recover from it, to know so little research is done on it, to know for all those years it was there but brushed off as your period. Then you get angry; angry at the doctors, yourself, and your body for failing, the world, and the people who give you home remedies and vitamins. I made myself a promise; if I survived 6th form and made it to university, I would do everything in my power to live fully and not just survive, to thrive and not just exist. I’m currently in my second year of university; I’m visiting Thailand in 2 months and seeing Taylor Swift in June, and I work in Europe’s biggest stadium in a cool job, so I guess you could say that I survive when I have to and live when I can.

Mistee Barrett