“Well you sure as hell don’t look like it honey!” Sorry I just read your mind out loud…
“Thought you were supposed to be sick?”
“You look really well!”
“Just how are you sick?”
“You must be better you look great!”
“You seemed fine at the party!”
“You said you were okay does that mean you’re better?”
Those are just some of the comments/questions I get on an almost daily basis. Simple yet ignorant questions. They heighten my paranoia. One of the joys of an invisible illness. Unless someone is/has lived it with you – you can forget any chance of genuine understanding.
Being awarded a blue badge was both a relief and a pain. God forbid should I get out of my car, rightfully parked in a disabled spot, and forget to drag my leg behind me into the shop! What am I playing at actually walking!?! People are so ignorant and judgemental.
As I adjust to my new life as a disabled person, I begin to care less – not enough but it’s a start! I’ve stopped looking around for approval before I leave my car. I’ve stopped limping to the shop door (like, seriously). I’ve stopped panicking if anyone I knew saw me and my blue badge. One day I’ll wave it proud – I’m just not there yet.
I’ve gone from being an independent, strong working mother to a dependent, jobless bum. At least thats how it feels. I was so proud being a working mom. Showing my son that you worked for your things no matter what. I didn’t do sick days and even tailored my chemotherapy around my shifts. I was She-Ra and very proud.
I miss my job. I miss working. I miss the interactions of daily life that make you feel validated. I want it back – I ache for it… But it’s not to be. This stupid disease has robbed me of my dreams and so many abilities. So given that there is nothing more they can do medically, I’m waiting to die – so I’m going to write my bleeding heart out. Pain to paper – well digital paper anyway (modern life!).💗