It’s been awhile since this conversation happened and I’m still feeling the pain from it. People have become so bold in their cruelty - it’s concerning. Completely agree we need to fight this together and so happy to be finding a network of like minded people.
Just nuts. While it's obviously fear of having lost "normalcy," it's no reason to be a complete asshole. Here to listen. Tag me. I'll repost and comment.
Thank you! I’m still learning how all of this works and I really appreciate you sharing.
What bothers me is that this “normal” people think they’ve gone back to? It was barely working before Covid and it’s certainly not working now. All they’re doing is prolonging the inevitable. Whereas we could adapt to a new normal NOW and save many people long term health consequences. But no - people prefer short term gain for long term pain.
Me too. There is nothing normal. I fear the havoc we have wrought on my childre, future gens, and folks like yourself. We cannot pretend like everything is ok.
I'm SO sorry someone said that to you. I've heard some horrible things about us and our community and it often feels like the entire country thinks I should die since COVID started but that's definitely on another level of cruel. When you said "They blame us for lockdowns & mandates and resent us for reminding them that the pandemic isn’t over. They dislike us for shining light on the fact that they are taking very real risks with their lives and their health (and risking ours in the process)"...I literally never thought about that before. Such a powerful insight. Thank you for this post and for letting so many of us know that we aren't alone.
Thank you for being my first comment! I’m still learning the ropes here but writing has been invaluable to me as a way of processing the trauma that comes with feeling like you’re bearing the brunt of everyone’s anger over the pandemic. It’s much more difficult to be disabled these days and I think it’s important we remember we aren’t alone.
My feeling is that we are blamed (perhaps subconsciously) because the lockdowns and restrictions were sold as a way to protect the vulnerable. I think that anger continues to grow because many of us mask and ask others to mask or test. We remind them things aren’t back to normal - and they resent that reminder.
Yay, happy to be your first comment! Writing has served the same purpose for me, big time. I'm glad we can share in that because like you said, it's much more difficult to be disabled these days. Look forward to all of your future posts 😊
Thanks so much! Since I’m new here and still figuring it out - would you mind telling me how you saw/found my post? Still trying to figure out how people find content here :)
OK so now I don’t feel so bad for missing this when you published it back in March, I don’t know how long I’ve been following you on mastodon but I absolutely love everything you write I feel like I can relate to all of it.
Thank you for saying this! I really appreciate it more than you know. Definitely don’t feel bad… I’m 99% sure I shared a broken link to this piece on mastodon (I was still learning). I’ve got the hang of things better now!
Of course! I got an email that you had subscribed to my page/Substack so that took me to your page and where I could subscribe. I had a different blog/writing platform before this but I've found that Substack has a way better community. Everyone helps each other out more by sharing other people's posts or recommending each other's Substacks and things like that to help us all get more exposure and subscribers.
That’s great to hear - thank you! It feels daunting when you first start - I’m still trying to figure out how to find people to subscribe to. While publishing content. Hopefully it’s old hat before too long!
Yes I suspect my old best friend really hates that I’m perfectly content to not participate in all the stuff that people are supposed to like to do, that they spend money on, so they can see and be seen doing the fun. She’s one of those people who thinks being so busy it’s causing her mental issues is a badge of honor, so to see that I can be content in my home with my cat and my books makes her either think there’s something wrong with me, or be faced with thinking the busy busy spend spend she thinks is how she is supposed to live maybe isn’t it.
That mindset is one of the reasons Covid denial is so successful I think. People have been taught it’s wrong to slow down and that being sick is a sign of weakness. When really is just a sign of being human.
That was brutal, I’m so sorry you had to endure those words. And although I haven’t encountered anything quite so extreme, I still hear echoes of those very sentiments
Thank you. That was definitely one of the worst and most aggressive forms of ableism I’ve experienced - but I’ve got many other people in my life giving echoes of it elsewhere (as you so eloquently put it). I worry when it’s become so socially acceptable to speak to disabled people this way.
I’m really embarrassed to admit that I didn’t particularly understand chronic invisible illness until I got one.
Sometimes I wonder if I was hit so hard by MECFS as karma for me not understanding my mom‘s fibromyalgia.
She she’s been gone for about five years but I still walk around muttering apologies to her frequently. And it was probably a lot worse for her, she was struck with chronic illness back in the Early 80s. I’m sure she was misdiagnosed with a mental illness, it took about 15 years for her to get a fibro diagnosis.
Don’t be embarrassed! It’s incredibly common to not understand invisible illness - it’s one of the reasons we need more advocacy.
I don’t think it’s karma - though I can completely understand why you would feel that way. I think the important thing is you recognize now what you didn’t understand back then. This way you will be a great ally to others dealing with invisible illness & can help people learn.
Unbelievable. Sickening. Heartbreaking. We all need to fight this together.
It’s been awhile since this conversation happened and I’m still feeling the pain from it. People have become so bold in their cruelty - it’s concerning. Completely agree we need to fight this together and so happy to be finding a network of like minded people.
Just nuts. While it's obviously fear of having lost "normalcy," it's no reason to be a complete asshole. Here to listen. Tag me. I'll repost and comment.
Thank you! I’m still learning how all of this works and I really appreciate you sharing.
What bothers me is that this “normal” people think they’ve gone back to? It was barely working before Covid and it’s certainly not working now. All they’re doing is prolonging the inevitable. Whereas we could adapt to a new normal NOW and save many people long term health consequences. But no - people prefer short term gain for long term pain.
Me too. There is nothing normal. I fear the havoc we have wrought on my childre, future gens, and folks like yourself. We cannot pretend like everything is ok.
I'm SO sorry someone said that to you. I've heard some horrible things about us and our community and it often feels like the entire country thinks I should die since COVID started but that's definitely on another level of cruel. When you said "They blame us for lockdowns & mandates and resent us for reminding them that the pandemic isn’t over. They dislike us for shining light on the fact that they are taking very real risks with their lives and their health (and risking ours in the process)"...I literally never thought about that before. Such a powerful insight. Thank you for this post and for letting so many of us know that we aren't alone.
Thank you for being my first comment! I’m still learning the ropes here but writing has been invaluable to me as a way of processing the trauma that comes with feeling like you’re bearing the brunt of everyone’s anger over the pandemic. It’s much more difficult to be disabled these days and I think it’s important we remember we aren’t alone.
My feeling is that we are blamed (perhaps subconsciously) because the lockdowns and restrictions were sold as a way to protect the vulnerable. I think that anger continues to grow because many of us mask and ask others to mask or test. We remind them things aren’t back to normal - and they resent that reminder.
Yay, happy to be your first comment! Writing has served the same purpose for me, big time. I'm glad we can share in that because like you said, it's much more difficult to be disabled these days. Look forward to all of your future posts 😊
Thanks so much! Since I’m new here and still figuring it out - would you mind telling me how you saw/found my post? Still trying to figure out how people find content here :)
OK so now I don’t feel so bad for missing this when you published it back in March, I don’t know how long I’ve been following you on mastodon but I absolutely love everything you write I feel like I can relate to all of it.
Thank you for saying this! I really appreciate it more than you know. Definitely don’t feel bad… I’m 99% sure I shared a broken link to this piece on mastodon (I was still learning). I’ve got the hang of things better now!
Of course! I got an email that you had subscribed to my page/Substack so that took me to your page and where I could subscribe. I had a different blog/writing platform before this but I've found that Substack has a way better community. Everyone helps each other out more by sharing other people's posts or recommending each other's Substacks and things like that to help us all get more exposure and subscribers.
That’s great to hear - thank you! It feels daunting when you first start - I’m still trying to figure out how to find people to subscribe to. While publishing content. Hopefully it’s old hat before too long!
Yes I suspect my old best friend really hates that I’m perfectly content to not participate in all the stuff that people are supposed to like to do, that they spend money on, so they can see and be seen doing the fun. She’s one of those people who thinks being so busy it’s causing her mental issues is a badge of honor, so to see that I can be content in my home with my cat and my books makes her either think there’s something wrong with me, or be faced with thinking the busy busy spend spend she thinks is how she is supposed to live maybe isn’t it.
That mindset is one of the reasons Covid denial is so successful I think. People have been taught it’s wrong to slow down and that being sick is a sign of weakness. When really is just a sign of being human.
Me too. I’m glad there is a community of support to belong to, makes me feel less alone with it all.
That was brutal, I’m so sorry you had to endure those words. And although I haven’t encountered anything quite so extreme, I still hear echoes of those very sentiments
Thank you. That was definitely one of the worst and most aggressive forms of ableism I’ve experienced - but I’ve got many other people in my life giving echoes of it elsewhere (as you so eloquently put it). I worry when it’s become so socially acceptable to speak to disabled people this way.
😢🫂💕
I’m really embarrassed to admit that I didn’t particularly understand chronic invisible illness until I got one.
Sometimes I wonder if I was hit so hard by MECFS as karma for me not understanding my mom‘s fibromyalgia.
She she’s been gone for about five years but I still walk around muttering apologies to her frequently. And it was probably a lot worse for her, she was struck with chronic illness back in the Early 80s. I’m sure she was misdiagnosed with a mental illness, it took about 15 years for her to get a fibro diagnosis.
Don’t be embarrassed! It’s incredibly common to not understand invisible illness - it’s one of the reasons we need more advocacy.
I don’t think it’s karma - though I can completely understand why you would feel that way. I think the important thing is you recognize now what you didn’t understand back then. This way you will be a great ally to others dealing with invisible illness & can help people learn.