7 hours ago
Since I “look” like a healthy woman when I am in public, it’s assumed that I must be. How it is possible that someone who looks good can be suffering so much, they wonder.
You don’t see how I look the 99% of the time that I’m at home. In my pj’s, unbrushed hair, not showered and puffy eyes from crying - that’s the real me. Make up can make me look pretty and healthy, clothes can make me look put together.
Nobody (or a few close friends and my parents) are the only ones who see me as the disaster I am at home. I know if you look better then you feel better. I try to sometimes when I have a bit of energy.
It’s like if someone has knee problems. If you don’t see them with it wrapped up, limping, or using a cane then you may not think twice about asking them how it’s doing. But with the visible signs, you are made aware.
I even thought of taking short daily videos for my Doctor. He’d then see me as I really am. It’s embarrassing though. Nobody wants to be seen ‘a beautiful disaster.’ I think we try and expend enormous energy to try and look and feel as ‘normal’ as possible. Just like putting on a fake smile sometimes to hide our physical and/or emotional pain and suffering.
We fear prejudice and judgement from society. Fear of not being believed, or have to justify our illnesses/pain to others, school or work.
Having an invisible disability still seems to have a stigma attached to it. Now that celebrities have been diagnosed with invisible illnesses and are sharing their stories, it has helped spread understanding and awareness. Society believes that if “they” have one (invisible illness) then it “must be real.” Sadly, it takes this to open people’s eyes.
Whatever it takes is beneficial for all chronic illness and pain warriors.