People don’t see

What people don’t see in someone having M.E.

People don’t see my pain. Constant pain. Muscle pain, joint pain and sometimes I could swear my hair hurts too.

People don’t see how hard it is for me to understand things. Simple things.

People don’t see I don’t understand what they are saying unless they’re looking at me.

People don’t see how I try not to fall down, when all the room is spinning around me.

People don’t see me trying to make a strong “normal” face, not to show the constant excruciating pain I am feeling.

People don’t see the fear inside of me, not knowing how the next day will be, because this darn illness is so unpredictable and you never know what will happen,

People don’t see the pain inside of me when someone close to me says that I’m “fine” or “better than what I try to show/better than what I think” or “not that bad“.

The truth is, you don’t see, because it is not seen. M.E. is not a disease that shows, it’s not something you can see written on someone’s forehead. You don’t know what it is, because you never felt it. “Everyone gets tired” does not apply, because this is not a normal tiredness, it’s the kind of tired that you don’t get over with, no matter how much you sleep, no matter how much you rest. It’s the kind of pain that is constant, always there, like a reminder that you’re never going to do the things you once were able to do. And when you think you’re getting better, you’re brain throws you a curve ball and you wake up the next day unable to read or form words or develop a weird stutter (which is not funny, trust me!).

And then there’s people who tell you you’re just exaggerating or wanting attention. Or those who say that you’re not “retarded” so you cannot have a brain or neurological issue (they’re the retards if you ask me..). And sometimes it’s the people you hoped would be there for you, who say “you’re fine!” and think you’re just being negative.

Trust me, I am positive! I help people being positive every single day, myself included. But you know what? Sometimes it gets a bit too much and sometimes I want to talk about it to those I love, but sometimes I don’t because I know that I will get that “you’re making it worse than it really is” comment. And that comment fucking hurts and it’s fucking disrespectful. Because unless you are living with this disease…you don’t know how it feels like.

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