I want to speak up as an invisible chronically ill Frauen.
I have a fluctuating painful debilitating conditioning which sometimes allows me pockets , windows of time where I can partake in stuff, I can lift things , move things,see people and celebrate stuff.
For every action, there is a reaction.
it has taken me a million years to learn this, sometimes I will do what I want to because I can't get help, I want to despite knowing it will cause me damage and sometimes underestimate how long I will pay for it after.
I try to factor in Social or fitness event when I have nothing too taking either side of said event.
Very many people observe and snipe.i have support workers at home because I'm falling apart without an extra pair of hands.
I am not proud of my fluctuating condition, how it impacts on me AS A parent, a staff member, a friend, someone who was a big part of our community and music scenes.
It's extremely depressingly to give into pain it's beyond damaging to hear how people speak about chronic invisible pain as cosplay and grifting.
I hear it all around me and sometimes understand why people choose to make their illness more visible with sticks etc .
I use aids at home but my ego won't Allow it outside whilst I can get away with it, other than a hideous trolley.
I despair when I read posts slating cock Monroe's fluctuating conditions.
She may overegg it and the nuerudiversity stuff but equally she could just be a very shit advocate using her platform poorly
Jack if you're listening, research your conditions and EDUCATE, make it easier for healthy people to understand our limitations, our good days, where we can win the world, our bad days when all we can do is sleep and cry and despair of our friends who critique our management of our multiple conditions.
Use your platform for good, not just bullshit about hair day, shit taste clothes and sandwiches
Bring in experts to talk about lived experiences.
Signpost. *Help people*!
Even lady gaga uses her platform to educate on chronic illness.
Be a pal jack, people listen to you for whatever reason