EDS Awareness Month Day #17: How you look vs. How you feel

A common phrase that someone with EDS or any Chronic Illness hears is, “Well, you don’t look sick” and for many of us that’s true. I wear makeup most days, and its one of my passions so I look good. And when I look good, I almost never feel good. I put on a mask of makeup, a happy face, and an passionate and excited tone of voice to make people think I’m ok. I don’t like it when people worry about me, it’s unnecessary and it makes me feel like a burden. The only time that i break this facade is when I am in immense pain. If I look like im in pain, you can bet its a very large amount, like ER amount. I just don’t like to waste all of my energy and time wallowing and thinking about being sick. It’s a waste and honestly I have so many other things to do. And probably one of the reasons I am able to be in school. But on the other hand, sometimes I feel like people I don’t think i’m really sick or not sick enough (whatever that means). People just see me in my chair but think of me like you would think of someone who was paralyzed. Yes, they cant walk, but otherwise their bodies function almost normally. But thats not how I work. I’m sick. I am in constant pain, and my GI problems are over the top. Please don’t judge a book by it’s cover, and please be considerate and thoughtful of everyone with EDS or chronic illness.

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2 thoughts on “EDS Awareness Month Day #17: How you look vs. How you feel

  1. This is so true! I’m constantly told – ‘you’re looking better’ – and that is equally as annoying… yes I may be looking better, but I sure as hell don’t feel it. It is definitely a mask we must present, there is no joy in constantly thinking of our illness, if we did we wouldn’t have any fun.

  2. I too suffer with EDS, definitely not as bad as you but I also have to other associated chronic illnesses and what you said in this post is exactly how i feel on a day to day basis. It is essentially the reason I have started blogging and trying to raise awareness about chronic illnesses and I am glad to see others doing the same. Great post

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