You see me when I am transformed. I do make-up, my hair is stuck.
I have learned all the little tricks to make my eyes look good without unnecessary efforts. I have learned all the tricks to look normal, despite the abnormal disease. I even smile when I hurt. I sit in silence while my body screams in pain inside. I do it to fit. I do it to feel normal.
So that others do not focus on a disease with which they do not know how to respond.
I do it once and for all, as if I am not sick.
You have not seen my worst days. Because I enclosed myself, I hide from you.
Those days, my husband, my mother, sees them … Because the nature of my illness forces me to stay home.
The last thing my body needs is to get out of the house when bad days come.
To unnecessarily exhaust myself with the smile that I feel inside that I have to use, or try to really make it look.
So I’m better locked up in my little apartment, looking at the walls that are so familiar.
There are few places where I would go on a bad day, even less on a terrible day.
It must be places where I feel absolutely safe. Places where I do not have to explain. I do not do it because I am ashamed of my reality, I do it because I need protection if I am more vulnerable.
But in the end I give people a very distorted picture of the real seriousness of my illness. You have never seen me fail, but that does not mean it does not happen.
You have never seen me breathless in the shower, but that does not mean it does not happen. You have probably never seen the shaking of my hands, nor how my face turns gray when I inhale my breath just by standing up. You do not see these things because I am home nowadays.
But I swear to you that these days exist. I say this because it is easy to judge a person’s condition based on what you see when you are with her, but you can not rely on that image alone.
If you see me, it may seem strange to you why I can not apply for a regular job. Perhaps it surprises you, why I write so enthusiastically about my chronic illness. You may think that I am exaggerating because I like to have pity. But if you see me, you can not see everything.
What you see one day is not every day. I try to be normal, because I do not want compassion. I do not want my illness to be central. I write because I want people to understand something that is not visible.
I want them to know what happens if they do not see me, so they can understand what my life is. It is not only to understand me, but to understand others who look like me. I write people to think twice, before drawing conclusions based solely on what they see.