I first got sick in 2015, after a bout of glandular fever and tonsillitis. Like a lot of people, I expected that I’d get better after being sick; it didn’t take long for me to realize I wasn’t in the same position as others my age. I would suffer greatly after a day of studies, and it wouldn’t ease with rest or sleeping. Others said they felt tired or sore too – without any guidance otherwise, I kept going. Pushing myself even through working full-time, into beginning university. Until it got to a point where I couldn’t push anymore.
I was finishing my first year of Performing Arts when I was hospitalized with a kidney infection. I did the final show pumped full of pain killers and smothered in numbing cream. Around this time I received, finally, a diagnosis for my ongoing issues – Myaglic Encephalomyelitis. I thought ‘everyone gets sick or has pain, I’ve managed four years of it now.’ It wasn’t until that Summer – going to work in Edinburgh – caused me a relapse with glandular fever. I flew home in a dizzy and fatigued haze, knowing that I wouldn’t be the same.
For a while I still tried to push. I changed degrees to a less physical course, in the hopes I could still keep up with friends even if I wasn’t fulfilling my dreams. It was gut-wrenching; living with others my age showed me just how bad I’d gotten. I needed a walking stick, which soon became needing a wheelchair outside the house. I’d often need to be fed and bathed by someone else. I felt completely alone with a lifetime diagnosis that saw no end in sight. I moved home at the end of that academic year; I tried to keep up virtual studying with the support in place during the pandemic, but it didn’t take long for most of my days to be the same. In bed, needing full time care and support.
Since then, I’ve had some good months followed by even worse flares. I’ve received additional diagnosis’ that give me hope. I’ve joined a social media community of fellow chronic illness sufferers in the hopes that no person out there should have to feel as alone as I did in those early days. I’m proud to be a disabled woman, spreading awareness and support for others just like me.
