By Grace, thekiwispoonie.com

I was one of those typical, mostly-healthy kids who was a little (or a lot) more flexible than usual. I was also quite prone to infections and struggled with allergies and what was assumed to be anxiety a bit, but mostly, I had a normal childhood. In high school I got really into competitive swimming, I did well at it and I was strong in academics as well. I left on a high: fit and strong, with academic awards under my belt, and a scholarship to start a medical degree at New Zealand’s top University. 

Half way through the first year, I realised I was in over my head. I was studying my butt off to only be scraping through with my grades. I was stressed out of my mind, and when I’m stressed: I lose weight, due to my stomach playing up. Foreshadowing! that’s common in EDS.  I was underweight, and walking around looking like “a druggy”. That was literally my boyfriend’s first impression of me. He thought I was a drug user because of my bad skin, paler, and pinched-skinny look. 

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Everything turned upside down when I was at my University job- life guarding. I had been feeling terrible all day, and standing on poolside, I suddenly started feeling sick and dizzy. I excused myself from poolside and went to sit down. I remember saying something to a colleague. Next thing – I was in a resuscitation bay at the hospital. I had passed out, and stayed unconscious for a really long time. Apparently my eyes were flickering weirdly and people thought it was a seizure. I’m still not sure, I may have just been fighting for consciousness. 

I had come around a few times, but kept passing out again at the hospital. I remember that the heart rate monitor would beep insanely every time I sat up, and I would then lose consciousness again. More foreshadowing – soon after this I would be diagnosed with a heart arrhythmia and POTS syndrome. They freaked out so much that they moved me to resus and pumped me full of epilepsy medication. 

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Three days later, I was discharged with the useless diagnosis of “psychogenic non-epileptic seizures“. They had stopped, probably because I had laid in a bed for three days and had heaps of rest. The diagnosis was incorrect. Over the course of the next three and a half years, I would gradually receive the diagnoses of SVT, POTS, cEDS, and MCAS.  

It was at the point of receiving the incorrect diagnosis that I decided the stress of university was too much for my body. I didn’t understand why, I just knew it was true. The university gave me medical exemption and allowed me to leave without any ‘fail’ grades on my record. 
It broke my heart to do this, mostly because I didn’t understand WHY. I had to give up on my dream and I didn’t have a decent medical explanation for why my body was giving up on me. This is why we absolutely need better diagnostic tools tools and awareness among the medical community for these types of conditions. 

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I am not sure if University is in my future again. But I do hope that if I try again, now that I have proper knowledge about what I am dealing with medically, I would have a much better chance at success.

Grace is a chronic illness blogger from New Zealand who writes about her experiences with EDS and POTS. Follow her on Instagram here.

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