Humans of ME/CFS

I got ill when I was thirteen before I had any qualifications. My sister is a lot older than me and I knew really early that I wanted to go to university someday, but when I became ill I had to face the reality that it may never be possible for me and this illness could be all I have for the rest of my life. It took me over a year to get a diagnosis at which point it was clear my doctor had no knowledge about ME/CFS. He told me that there was a local specialist service, but there was nothing they could do for me and that I seemed to be showing improvement, so it was likely I was starting to recover. I tried to go back to school full time, but I soon crashed and couldn’t be on my feet for more than 5 minutes a day.

When I read things from this time it feels surreal like a dream it’s like I wasn’t awake. Eventually, I saw another doctor who gave me a referral to the local ME/CFS service who were able to put me in touch with a local hospital school where I ended up achieving high grades.

I then managed to start 6th form on a normal timetable, but I was still struggling every day. People didn’t see this in me, they thought I’d recovered and there was nothing wrong with me– even people who I thought knew me well. I could see the skepticism they had. It was just easier to pretend I was normal, but this made me withdraw a lot socially because I was constantly lying and hiding such a huge part of my life for fear of judgement.

I came out of 6th form with 2 As and a B and I managed to build up enough strength to entertain the idea of going to university. I was also determined to be as up front about my health as possible and this was the best thought I’ve ever had.
My first year at university was really hard. I ended up in halls with some very judgmental people who could never understand my situation, but I have meet a few gems who I’ve been able to open up to about my health without inhibition. I owe my achievements and my new-found confidence to every single person who has ever shown an interest or asked about my health.