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.
Hi thank you for this. I'm a long term ill person. Covid infection pushed me over the edge into being housebound; I wasn't before.
I wonder if part of the reason someone would say such a thing is that people have become so used to extreme language online that they've lost connection with how it actually feels to receive extreme opinions like that?
Another thought I have about this is that long-term illness has always been a class-based issue. The chronically ill poor would catch an infection and die, or die of malnutrition or cold, whereas the chronically ill middle and upper classes would live much longer, in their warm, dry homes with plenty of food. The net result of all that would be very few chronically ill people, as the majority of them would be poor & die. So it is historically "novel" to have large numbers of us living for years and years.
In the UK, our government is unhappy that there are an extra 400,000 people on sickness & disability benefits since the pandemic began. Even the new Labour govt, which has traditionally supported disabled people, is continuing the previous government's efforts to kick us off benefits. They want us to tell them what we spend the money on, in the hopes of proving we don't really need to be given more than unemployed, able-bodied people get.
You’re welcome - I hope it helped and I’m sorry to hear that your Covid infection left you bedbound. I hope you can recover some of your baseline in time.
Very interesting theories and all are certainly possible - goodness knows I have people shouting “survival of the fittest!” At me all the time. It’s like they’re annoyed we survive as long as we do and would prefer we just die.
In Canada we’ve expanded our MAiD (medical assistance in dying) program to include people with disabilities who are not terminal. It’s disproportionately those who are poor and/or lacking family support who end up approved.
I’ve heard that the UK have met with those who were behind our program as your government are considering adopting something similar. It’s dark times for the chronically ill.
This is such a painful and powerful reflection. I can’t believe someone would say something so cruel, especially someone close to you. It really shows how much the pandemic has exposed the ableism that’s always been lurking under the surface. The way you break down the idea that chronic illness isn’t always terminal but still drastically impacts quality of life is so important cuz people really don’t get that. It’s heartbreaking to lose relationships over something so basic as wanting to be safe and cared for, but your determination to keep advocating, even in the face of such hate, is inspiring. You make a strong case for why we need to fight for a kinder, more inclusive world ❤️
Thank you so much for saying - I really appreciate it!
I want to try and shift people's perceptions of chronic illness and disability. They often have a very limited view of it - and it excludes many of us completely. Perhaps if they understand it more they will be more accepting.
Unfortunately there's much work to be done as we live in a far more ableist society than I realized. Covid seems to have given people permission to be louder and more overt with their ableism. Whenever someone says mitigations aren't needed because 'only the vulnerable' have to worry - I just want to scream. It is effectively saying that we are acceptable losses - and hearing that line over and over again from leaders, doctors, hospitals etc has allowed people to embrace their ableism and push it onto us. We in turn must push back.
You're absolutely right, changing perceptions around chronic illness and disability is essential, especially when society continues to marginalize these communities. Also it's heartbreaking to see how normalized dismissiveness has become, especially post-COVID. Your work in raising awareness is so important because it challenges those harmful narratives and helps create a more inclusive space where everyone's value is recognized.
Thank you for saying - that’s exactly what I”m trying to do! Challenge the harmful narratives as well as create a safe space for people to learn and find support. It can be hard to find that these days - a lot of social media is overrun with trolling and it’s hard on the nervous system and mental health.
I think a lot of it is due to ignorance. People just aren't taught the realities of disability, and society actively tries to hide them from public view and discussion.
I remember my sister parroted the line to me that COVID really only affects the sick and elderly. I pointed out to her that I'm disabled and our parents are in their 70s, and she got SO OFFENDED that I could possibly believe she had said to me that she didn't value our lives. She just couldn't make the connection. (I've had to stop speaking to her because, much as she loves me and wants to support me, she has proven herself completely incapable of seeing outside her own point of view, let alone understanding what it's like to be disabled or what kind of support we actually need.)
I'm sorry you lost a friend over this. I'm sorry you had it said to your face. But I really appreciate you writing about it, so maybe others can begin to understand. Visibility is the first step to fixing this.
Thank you for commenting - and for recognizing that we NEED visibility to bring about change.
I genuinely believe there are people out there saying it ‘only effects the vulnerable/elderly’ who don’t realize HOW that undermines and de-values us. So my hope is to help them realize that what they say and how they view us matters.
This friend was obviously a lost cause - but I still believe in the good in people and that not everyone will be a lost cause.
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.
Hi thank you for this. I'm a long term ill person. Covid infection pushed me over the edge into being housebound; I wasn't before.
I wonder if part of the reason someone would say such a thing is that people have become so used to extreme language online that they've lost connection with how it actually feels to receive extreme opinions like that?
Another thought I have about this is that long-term illness has always been a class-based issue. The chronically ill poor would catch an infection and die, or die of malnutrition or cold, whereas the chronically ill middle and upper classes would live much longer, in their warm, dry homes with plenty of food. The net result of all that would be very few chronically ill people, as the majority of them would be poor & die. So it is historically "novel" to have large numbers of us living for years and years.
In the UK, our government is unhappy that there are an extra 400,000 people on sickness & disability benefits since the pandemic began. Even the new Labour govt, which has traditionally supported disabled people, is continuing the previous government's efforts to kick us off benefits. They want us to tell them what we spend the money on, in the hopes of proving we don't really need to be given more than unemployed, able-bodied people get.
You’re welcome - I hope it helped and I’m sorry to hear that your Covid infection left you bedbound. I hope you can recover some of your baseline in time.
Very interesting theories and all are certainly possible - goodness knows I have people shouting “survival of the fittest!” At me all the time. It’s like they’re annoyed we survive as long as we do and would prefer we just die.
In Canada we’ve expanded our MAiD (medical assistance in dying) program to include people with disabilities who are not terminal. It’s disproportionately those who are poor and/or lacking family support who end up approved.
I’ve heard that the UK have met with those who were behind our program as your government are considering adopting something similar. It’s dark times for the chronically ill.
This is such a painful and powerful reflection. I can’t believe someone would say something so cruel, especially someone close to you. It really shows how much the pandemic has exposed the ableism that’s always been lurking under the surface. The way you break down the idea that chronic illness isn’t always terminal but still drastically impacts quality of life is so important cuz people really don’t get that. It’s heartbreaking to lose relationships over something so basic as wanting to be safe and cared for, but your determination to keep advocating, even in the face of such hate, is inspiring. You make a strong case for why we need to fight for a kinder, more inclusive world ❤️
Thank you so much for saying - I really appreciate it!
I want to try and shift people's perceptions of chronic illness and disability. They often have a very limited view of it - and it excludes many of us completely. Perhaps if they understand it more they will be more accepting.
Unfortunately there's much work to be done as we live in a far more ableist society than I realized. Covid seems to have given people permission to be louder and more overt with their ableism. Whenever someone says mitigations aren't needed because 'only the vulnerable' have to worry - I just want to scream. It is effectively saying that we are acceptable losses - and hearing that line over and over again from leaders, doctors, hospitals etc has allowed people to embrace their ableism and push it onto us. We in turn must push back.
You're absolutely right, changing perceptions around chronic illness and disability is essential, especially when society continues to marginalize these communities. Also it's heartbreaking to see how normalized dismissiveness has become, especially post-COVID. Your work in raising awareness is so important because it challenges those harmful narratives and helps create a more inclusive space where everyone's value is recognized.
Thank you for saying - that’s exactly what I”m trying to do! Challenge the harmful narratives as well as create a safe space for people to learn and find support. It can be hard to find that these days - a lot of social media is overrun with trolling and it’s hard on the nervous system and mental health.
That is an awful thing for someone to say to you.
I think a lot of it is due to ignorance. People just aren't taught the realities of disability, and society actively tries to hide them from public view and discussion.
I remember my sister parroted the line to me that COVID really only affects the sick and elderly. I pointed out to her that I'm disabled and our parents are in their 70s, and she got SO OFFENDED that I could possibly believe she had said to me that she didn't value our lives. She just couldn't make the connection. (I've had to stop speaking to her because, much as she loves me and wants to support me, she has proven herself completely incapable of seeing outside her own point of view, let alone understanding what it's like to be disabled or what kind of support we actually need.)
I'm sorry you lost a friend over this. I'm sorry you had it said to your face. But I really appreciate you writing about it, so maybe others can begin to understand. Visibility is the first step to fixing this.
Thank you for commenting - and for recognizing that we NEED visibility to bring about change.
I genuinely believe there are people out there saying it ‘only effects the vulnerable/elderly’ who don’t realize HOW that undermines and de-values us. So my hope is to help them realize that what they say and how they view us matters.
This friend was obviously a lost cause - but I still believe in the good in people and that not everyone will be a lost cause.
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.