When I was sixteen, I was informed that I had multiple, incurable health conditions, and my life was forever changed. It was as though much of my freedom had been taken from me, within the thirty minutes in which I sat in the neurologist’s office. Any hopes I had of a ‘speedy recovery’ dwindled, and my future changed in an instant. A future that I still struggle to understand, halfway through my university degree.
I don’t ever feel energised, instead I grapple with a perpetual heaviness on my body, making it difficult to move, or even think.
I have MECFS and Chronic Pain Syndrome, resulting in a laborious and agonising every-day life. I struggle to complete simple tasks, having to pace myself, and sleep more than the average person. It’s difficult to describe, as not many can fathom the concept of constant pain. I have a headache every second of every day, only going away if I’m asleep. I don’t ever feel energised, instead I grapple with a perpetual heaviness on my body, making it difficult to move, or even think.
As you can imagine, this makes university difficult.
As my first year began, I struggled immensely with finding a balance. I sacrificed a lot of friendships and opportunities, simply unable to go to nights out or socials. It was immensely lonely, as I grappled with jealousy – why could others go out and party every night, while I was stuck in bed, sometimes too exhausted to move? The people around me in my first year preferred nights out as opposed to quieter hangouts, rendering me an outsider as I constantly had to decline. I had it in my head that I had to choose my academics at the expense of my social life, forsaking any kind of balance. I was in societies, but couldn’t attend their socials or events, which became disheartening as it felt I was an outsider. I also felt guilty that when I did go out, or hang out with friends, that my disability dictated our plans – what time we would go home, what we did or how impulsive we could be.
I also felt guilty that when I did go out, or hang out with friends, that my disability dictated our plans – what time we would go home, what we did or how impulsive we could be.
I was lucky to find friends more like me, and I learnt to balance my life more. My second term was a lot easier, as I began to take advantage of the help that the University of Exeter offers. I had conversations with my professors, on how they could support me more, and I began to have more free time. I spent more time with my friends during the day, taking trips to the beach, or to cafes. I have gone outside of my comfort zone more, as long as I make time for my health to even things out.
In my second year, I’ve managed to keep this balance.
In my second year, I’ve managed to keep this balance. I’m on two committees, as I now make sure I have time to continue my hobbies. I still make sure I have a lot of time to spend resting on my own, but I don’t feel lonely. I get more help from the university’s Accessibility team, and have received financial help with a Disabled Students’ Allowance. I am also starting a new treatment for my conditions, which I’m really looking forward to. The pain and exhaustion are still there, and are still upsetting, but I’m lucky to have a group of caring and supportive friends, and support from professionals.
