But you don’t look disabled??

One of the most common sayings I hear is, “you don’t look disabled??” Which is usually a result of people’s perception of what a disabled person should look like. It is a definitive barrier faced daily by many people who have an invisible disability. Just because we look well on the outside, doesn’t mean we are!

One of the biggest problems I personally face is trying to get friends and people in general to understand EDS and how it impacts my life. No words can truly describe what it is like to live with Ehlers-Danlos Syndrome so it is understandable how people may not comprehend it. However, It can be very frustrating how people think this is a condition whereby you are just “bendy”. What they don’t realise is the constant pain, the fatigue, dizzy spells, vomiting in the night and passing out, along with the continual dislocations. All these can take place behind closed doors, and it is very hard for a healthy person to understand.

In the past, I’ve struggled greatly with talking about my conditions, and still find it hard to be honest about how I am feeling. As soon as someone says “how are you?” My automatic reply seems to be “fine thanks.” It’s just so much easier than saying how I am really feeling.
I am extremely lucky to go from being bed bound, to being able to work. I often still struggle with symptoms, but between the ages of 15-17 it was very hard for me to go from being an energetic, bubbly individual to struggling to just get out of bed. I had my education, social life, friendships and relationships taken away and spent years wondering whether I’ll ever be the same again. I am fortunate to be put on medication to control my heart rate, which has contributed to my getting better, but I still suffer from flare ups, dislocations and live my life constantly under the prospect that I may end up using a wheelchair full time again.


I’d be lying if I said I didn’t have my “wobbles” Or moments where I wish my life was different. There would be many times where I would cry for so long, due to the frustration of not being able to do “normal” things. There have even been times where I have felt guilty over being upset because I know of other people with EDS who are so much worse off than me.
The point I’m trying to make is that disability is a spectrum. It is something that you can’t define by someone’s physical appearance alone. It is not fair to dispute whether someone has a disability by the way they look, every single one of us is battling something the other can’t see.

Sophie
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