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Thursday 26 May 2016

But you don't look sick?

"Have you ever seen someone park in a disabled spot and look perfectly healthy as they step out of the car? You wonder, "They're not disabled, they can walk just fine! They must have that disabled badge illegally." What most don't stop to think is that perhaps this individual may have an invisible disease. A disease that causes a brief walk across the parking lot to feel like the equivalent of running the length of a football field five times over while every single joint screams in pain."

I'm very aware of the fact I don't look poorly and I look rather normal for someone who has such a life threatening disease. But I can assure you that if you could see my insides, they would tell a very different story.

Anyone that knows me well will know I'm very stubborn and I refuse to give up. Work is hard, much harder than it should be and it's getting harder; but I won't give in. It may take me more time, and I made need to take five minutes but I will not give up. When I see my friends, you may see me laughing, talking and walking. But what you don't see is me asking them to slow down, or me telling them that I'll talk in a minute because I can't walk and talk. You don't see me stopping to catch my breath and gathering myself because I feel 'funny' (faint/light headed), to you, I'm looking in a shop or checking my phone.

People assume that I can breathe better because I'm out and about and doing things, unfortunately no I can't breathe better at all, it's worse when I'm out and about. But I refuse to sit here and not do anything; it might take me longer, I might have a funny 5 minutes, but I'll do it, no matter how hard it may be.

Sometimes I do give in and say yes to the use of a wheelchair, but only if I'm not in Swindon. I don't know why but I'm not ready to see people I know in a wheelchair out and about. Even though some days when I'm out I could really benefit with being in one, I refuse to use it. I'd rather struggle than be seen by people I know in a wheelchair.

And even though I'm in my wheelchair, I still don't look sick, and my illness isn't actually that visible. I just look like a young girl, in a wheelchair, with no obvious reason as to why I'm in a wheelchair.

I'm still learning how to not be embarrassed when asking for help and for people to slow down. And this is something else I'll have to learn to accept. I've already come so far in just a year with my wheelchair, but I think it'll be a while till I'm ready to accept it fully.

"All too often judgments are made that the patient cannot be ill, because they do not look sick".

Love, Erika


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