Pretty crappy. Which sucks when you already feel pretty crappy.
I mean not totally invisible to the trained eye, but to the mere mortal, one would look and see nothing.
75% of the invisible are women.
They are everywhere you look, but can’t see. They are your family, your friends, and your coworkers. They are probably even sitting next to you in traffic right now.
And I am one of them.
No, I’m not talking about zombies or space aliens, I’m talking about those of us with an Autoimmune disease. There are 50 million people in America today suffering with some type of invisible illness. What is interesting (and a little horrifying) is that almost none of these diseases have a cure, and most of them have little or no research money to look for one.
There is no medical speciality for autoimmune disease as a group, or someone in the medical arena looking for the root cause of why our bodies are turning on themselves.
We are the black hole of illness.
The reason for all of this lack of attention is partially because the problem is complex, but I’m not hear to talk about that.
I want to talk about what it FEELS like to be invisible.
The other day I was to weak to cook, and opted for take-out for dinner. The restaurant was on a busy street, so I was thrilled to find a handicap spot close by. As I was pulling out my placard, the owner of the dry-cleaner next door came out and started yelling at me that I needed to move. I flashed him my placard but he said anyone can get those now and I didn’t deserve one. I started to explain I had a disease that makes me very weak and I could barely walk. He laughed, saying I looked fine. Then he grabbed a hose, ranting that if I didn’t move my car, he would spray it and me with water.
Why am I having to explain my medical condition to a dry-cleaner? And why did I have to park three blocks away which took me almost 20 minutes to walk and a lot of rest stops?
Part of me wanted to back over him with my car, which, would have been completely justified, but may have caused even more problems.
[bctt tweet=”The bigger issue is that folks don’t believe us when we say we’re sick because we look normal. “] Although I’m happy to look normal, this is very frustrating and creates a lot of anxiety when we go out.
I would love to never acknowledge that I have a medical condition and jog over to get our food (and sometimes I can), but life doesn’t always work that way. Why is there only compassion if you are bald or missing a limb? I work very hard to look and feel normal-ish but it isn’t always the case.
Navigating an invisible illness is tough enough. We plan our day, then our body laughs and replans it for us. It would be great to have some support during those bad days so we don’t have to make excuses or explain to dry-cleaners why we want to legally park in a spot that is meant for us.
Don’t assume that if a person looks fine that they are fine. You never know what is happening in their life. We are the tortoise in a world of rabbits.
Who knows, one day you may be one of us too, and we will be happy to return the favor.
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