You see me well, I look good, but I’m not good. Drafted By A Patient.

You see me when I’m transformed. I put on makeup, my hair is fixed.

 I learned all the little tricks to make my eyes look good without unnecessary effort. I learned all the tricks to look normal, despite the abnormal disease. I smile even though I have pain. I sit in silence while my body is screaming in pain inside. I do it to fit. I’m doing it to feel normal. 

So that others do not focus on a disease with which they do not know how to react.

I do it once and for all, to look like I’m not sick.

You have not seen my worst days. Because I shut myself in, I hide from you. 

Those days my husband and my mother see them … Because the nature of my illness forces me to stay at home.

The last thing my body needs is to be out of the house when bad days come.

To exhaust myself unnecessarily with the smile that I feel internally that I must deploy, or try to make it look real.

So I’m better locked in my little apartment, looking at the walls so familiarly known.

There are few places where I would go on a bad day, even less on a terrible day. 

They need to be places where I feel 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 when I am more vulnerable.

But ultimately, I ended up giving people a very distorted picture of the real gravity of my illness. You still have never seen me fail, but that does not mean it does not happen. 

You’ve never seen me out of breath in the shower, but that does not mean it does not happen. You’ve probably never seen the trembling of my hands, nor how my face turns gray when I swallow my breath just by getting up. You do not see these things because I’m at home these days. 

But I swear to you that these days exist. I say this because it is easy to judge the condition of a person according to what you see when you are with her, but you can not rely solely on that image. 

When you see me, it may seem strange to you why I can not apply for a regular job. Maybe it surprises you, why I write about my chronic illness with such fervor. You may think that I am exaggerating because I enjoy giving pity. But when you see me, you can not see everything. 

What you see in a day is not every day. I try to be normal because I do not want pity. I do not want my illness to be the focus of attention. I’m writing because I want people to understand something that is not visible. 

I want them to know what happens when 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 are like me. I am writing to people to think twice, before concluding based only on what they see.


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1 Response

  1. carol says:

    I have had FM since 2009. I do not ever pretend to be “all okay” because I am not the folks who know me understand there are good days and bad days. Days when I can’t recall the word I need to express anything. So with all due respect stop putting on the mask you want the world to see when its the face they should see. take care carol f. e.

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