From your words to people’s brains, I pray. Nothing worse than people assuming you’ll get back to normal/better when you ARE NORMAL!! The normal where we don’t know how we’ll be from day to day, hour to hour. Hooray for the good days/times because they do happen. But realistically I can’t always show up. I wish more people understood the dilemma faced by the chronically ill.
We want to be there. But in order to be there, all the stars have to align while we worry about doing too much. Or we know we’ll be down for a few days after an event. No easy answer. And I truly wish more people understood.
Suddenly realised reading your excellent work that’s something I’ve been finding hard with some people around me - eventually diagnosed with ‘chronic’ migraine and the constant expectation that ‘now you know what it is’ and if I just do this or that I’ll be ‘normal’ again. Be fixed. Turns out I was never ‘normal’ and broke myself trying to perform on a stage not designed for me.
When I was little and adults asked if I was better yet, I’d tell them “no, my illnesses are INCURABLE” in a deadpan tone and watch them squirm. Sometimes I’m tempted to start responding like that again.
Excellent work, you’ve explained this scenario and its impacts so well. It’s exhausting putting up an act about our pain to ensure other people aren’t “uncomfortable” with our reality.
"They’re waiting for us to return to some previous version of ourselves, like we’re a software update that’s been buffering for two years." Mmm mmm mmm. Printing this essay and plastering every wall of the world with it.
This really hits home. Performing wellness just to make other people comfortable...I love how you explained that acceptance isn't giving up, but it's actually the most loving thing someone can offer. It is such a relief to be around people who don't need you to have this story book ending to chronic illness. You put into words what so many of us are feeling but not saying.
From your words to people’s brains, I pray. Nothing worse than people assuming you’ll get back to normal/better when you ARE NORMAL!! The normal where we don’t know how we’ll be from day to day, hour to hour. Hooray for the good days/times because they do happen. But realistically I can’t always show up. I wish more people understood the dilemma faced by the chronically ill.
We want to be there. But in order to be there, all the stars have to align while we worry about doing too much. Or we know we’ll be down for a few days after an event. No easy answer. And I truly wish more people understood.
Hopefully the word will get out!
I've heard that before. My favorite response to, "How are you?" is "Alright." It's short and (mostly) true.
Try saying I feel like a steaming sack of 💩 sometimes. People don't want to hear the truth. They'll run for the exits
You just made me spit my coffee out of my nose! 🤣🤣🤣
OK, I'll try that sometime. Thank you for the hilarious suggestion.
You have a gift. You describe our feelings and challenges so well. Thank you.
I agree! This is exactly what I’ve wanted to say but not had the words for. Thank you ❤️
You just made my day! Thank you!
Suddenly realised reading your excellent work that’s something I’ve been finding hard with some people around me - eventually diagnosed with ‘chronic’ migraine and the constant expectation that ‘now you know what it is’ and if I just do this or that I’ll be ‘normal’ again. Be fixed. Turns out I was never ‘normal’ and broke myself trying to perform on a stage not designed for me.
It’s funny how we do that stuff to ourselves and lufe is so much easier when we just stop the circus! 🎪
When I was little and adults asked if I was better yet, I’d tell them “no, my illnesses are INCURABLE” in a deadpan tone and watch them squirm. Sometimes I’m tempted to start responding like that again.
Excellent work, you’ve explained this scenario and its impacts so well. It’s exhausting putting up an act about our pain to ensure other people aren’t “uncomfortable” with our reality.
"They’re waiting for us to return to some previous version of ourselves, like we’re a software update that’s been buffering for two years." Mmm mmm mmm. Printing this essay and plastering every wall of the world with it.
this entire article is insanely good. thanks a lot for speaking about this!
This really hits home. Performing wellness just to make other people comfortable...I love how you explained that acceptance isn't giving up, but it's actually the most loving thing someone can offer. It is such a relief to be around people who don't need you to have this story book ending to chronic illness. You put into words what so many of us are feeling but not saying.