My experience of having a hidden disability at uni
This is what it’s like living with EDS
If you saw me walking around campus, you'd probably think that I was just another average student, who has a talent for putting together a well-coordinated outfit. Truth is, I have a condition called Ehlers Danlos Syndrome (EDS for short).
EDS is a rare genetic condition that I inherited from my mum where basically my body doesn't work as well as it should. I'm super bendy (people always wink and say that sounds amazing until I tell them about the dislocations). I bruise easily, I suffer from chronic pain and chronic fatigue, which means I have a wicked talent for napping like a pro.
I was born with EDS but wasn't diagnosed until I was 19 when my symptoms became a lot worse. I had gone from having back pains and the occasional trapped nerve to regular spasms, almost constant pain and fatigue that made me need to nap nearly every day.
Being told at 19, just before you start at uni in the big city (I'm a country bumpkin from St Andrews), that you've got this condition that's never going to go away is not much fun. I had to face the fact that whilst I should be in the prime of my life, I often feel like an 82-year-old woman. I still don't think I've got to my prime to be honest.
I think the word "chronic" is horrible, it creates the sense of this thing never ending, getting worse, having to be "managed". That's actually the thing I've been told by every health professional I've seen about my EDS, that my condition needs "managed", that I need to create "good habits" and keep on top of it "every day". Let me tell you, that doesn't make for good advice.
I also have anxiety and being told at the age of 21, as I was last month by a pain management specialist, that I need to think "long term" and instil "good habits" for the "rest of my days" wasn't good. I shouldn't have to think about consequence and effect every day, I should be living life like there's no tomorrow. Unfortunately for me, if I live life like that, tomorrow for me includes a hell of a lot of pain.
Every decision I make has to be weighed up against the results. If I go do a food shop today then that will make going out later really difficult. If I go for a walk in the park, chances are I won't be able to go out that night or the day after. And if I'm already in a bad state, there's no chance I'm doing anything (except having a nap, having a nap is good).
This is really difficult for a lot of people around me to understand. It's not easy to explain why I live life thinking about consequences or why I'm in so much pain. I feel like a horrible friend for refusing so many invitations or cancelling plans, it's got to the point where some people just don't invite me anymore. I don't want you to think that I don't like partying or getting wrecked on a night out (a night out to Hive not long ago is still making me cringe at the thought) but I'm just not physically capable of living the typical student life.
That being said, things are on the up at the moment. I'm seeing a physio again and she is so lovely – she actually understands my limits and doesn't push me too hard. I'm also managing to go to the gym regularly (I've become one of those people I swore I would never be), and I have a wonderful group of friends that try to understand what it's like for me. My flatmates often help me out with my chores and make sure I'm not working too hard.
Above all, my boyfriend has been my confidant and helper for the past five years and I'm so eternally grateful for all of his help, he regularly goes out of his way to help me, whether that fetching me hot-water bottles or helping me take off my shoes on the days when I can't move easily. It's the people around me that make it easier to deal with the situation and I'll never stop being very appreciative.
I think that there is definitely a movement towards becoming more aware of hidden disabilities and not assuming just because someone is not in a wheelchair, they are in peak physical health. There's still a long way to go though and I think that we just need to spread the awareness. There's a lot of pressure when you're a student, people tell you these are going to be the defining years of your life and that you're to live them to the full. It's difficult knowing the cards are stacked against you. But with some friends, a hot-water bottle or two and a good nap, life seems a bit easier.