Making the Invisible Visible

SOURCE: ehlers-danlos.org SOURCE: ehlers-danlos.org

I’m 19 years old. I have Ehlers-Danlos Syndrome Type III. Never heard of it? It doesn’t mean that it doesn’t exist. EDS is a connective tissue disorder. It is invisible. There are many different types but for me this means chronic pain, multiple dislocations, multiple subluxations, and chronic fatigue amongst a variety of other stuff.

My illness may be invisible but I am sure that I am not. The only time you’ll be able to tell I am any different to an ‘average’ person, is when my arm’s in my sling, or I’m using my crutches. When I use my aids, people tend to be more polite such as offering me their seat on public transport, or saying do you want this seat when out and about, or simply asking ‘how are you today?’. People also stop asking you to do things with them because of the amount of times you/I have to turn them down. An offer would be nice, even if I do have to turn you down. Don’t forget me, I am still here.

I struggle on a day-to-day basis with the simple things in life. It’s very rare that I can open a bottle for myself, I have poor grip, and when I can eventually get the lid open, my fingers are in a place where they shouldn’t be, and this is just one example. Public transport for me is horrendous; it’s one of the areas in which I do struggle. As I’m young, people assume that there is nothing wrong despite me being so tired, struggling to walk and really needing the front seat on the bus. I’m never offered the opportunity. The looks and the comments that are made by the general public, on the days where I stand my ground are awful. These are just a couple of examples of the daily struggles.

Just because my condition is invisible, it doesn’t mean that I am or that I am not suffering. I live in a society today, where if you can’t see things they aren’t real, they don’t exist.

I’m 19 years old, and I have been given a sentence for life, which is only going to get worse. I’m always changing plans, changing the plan which I’ve had for my life. I’ll spend the rest of my life fighting against EDS, but I never thought that I would have to spend my life fighting to get recognition for my condition. But I will. I’ll fight for awareness in support for others in the same situation as me. I’m wearing my zebra stripes with pride right now.

I’m raising awareness for all us with invisible illnesses. I’m not alone, you’re not alone. There are plenty of us out there.

#makingtheinvisiblevisible

 

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