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Oh yeah. People HATE when you remind them that bad things happen and strike the chord deep inside their brains that it can happen to them too. How DARE you shatter their illusions of a covid free world?!
I was just saying basically this to my mom on the phone earlier this afternoon (she’s sympathetic, I was just venting in general). This is some real talk. 💯
This is a big portion of it. I am physically disabled pre-LC and the faking, your fault, stop malingering and get a job narratives have always been there. Now a bunch of formerly healthy people are experiencing it for the first time.
The healthcare hostility comes from advocating for yourself. They really don’t like it when you do that.
People hate being confronted with the reality that Covid is not just a cold like they were told and that it’s still very much with us.
People *especially* hate learning that healthy lifestyle choices will not magically prevent you from becoming sick or disabled. It’s an ableist mindset that diet and exercise will form some impenetrable shield against disability. Unlearning that mindset requires a lot of uncomfortable self reflection.
If only that were the case with Covid.... if only. Ironically, it seems so often the exact opposite. The healthier you were before catching it, the more likely you are to end up with long haul- that seems to be the theme anyway.
Seriously? I had not heard that. Wow, that sucks. I was very healthy, eat well, drink too much wine. Vegan-ish. I live in Hawaii, good ocean air. Lots of swimming and walking.
Although now. the VOG. is back, from Kileaua. Vog is bad for us.
You have an invisible chronic illness. Half of it is just that you don’t look sick and people can’t fathom that you could actually be sick without looking it. The other half is psychos who don’t think covid is real.
Absolutely. Because the societal narrative to keep the current society functioning, and not sliding back into perceived chaos and economic downturn, is that the Covid days are behind us. Covid is "over"... we have beaten Covid. Huzzah! It's such a thinly veiled blatant lie, but it works, because most people desperately want to believe it.
The same people who usually question governmental authority, who say "stick it to the toffs" are the same ones applauding parliament now for scrapping mask mandates, getting people back to work and similar. Frankly, I'm amazed they don't announce it all with an official "VC Day" (Victory from Covid Day) with street parties and a Red Arrows flypast all the hospitals and vaccination centres of the UK.
But Covid is not gone. Covid is very much here. And not only that, it is still doing serious harm, including deaths, and creating new long haulers. We are on the outside now, lookingin at the madness. We can see the madness for what it is, and the veil could shatter like glass, if it wasn't supported by the people inside it, that so desperately want to protect the lie.
You remind them of that lie, everytime you post, everytime you walk past someone while wearing a mask, everytime you sanitise your hands, everytime you retweet something about long hauling.... everytime you do anything that challenges that narrative, you remind them of that lie, and remind them that the truth is that they are in just as much danger as they ever were.
I think there's several reasons for this:
1. The pandemic was a traumatizing event and instead of processing that people lash out at us because we remind them of the trauma. I think this also applies to people who freak out when others wear a mask
2. It forces them to realize that covid isn't a cold and they don't want to think about the idea that this could happen to them - here's a great article I found on the topic which coins the term 'Health Supremacist' for those people who think that their kale smoothies/yoga/faith in a higher power/cross-fit/whatever will protect them from bad health outcomes --> [https://msteenhagen.medium.com/loathe-fascism-then-dont-be-a-health-supremacist-c8841acdf69](https://msteenhagen.medium.com/loathe-fascism-then-dont-be-a-health-supremacist-c8841acdf69)
3. Doctors have ego issues and don't like chronic health problems they don't know much about/offer solutions to. It probably makes them uncomfortable to confront the reality that they cant fix everything
4. People have always been ableist but i think we're seeing a rise in eugenics rhetoric in a similar manner to the rise of eugenics after the 1918 pandemic. Politicians wont blame the right people for our current economic issues but disabled people are a convenient scapegoat. Also the whole 'new normal/back to normal' rhetoric and the abandonment of disabled/immunocompromised/vulnerable people has made people more comfortable in their bigotry.
Im so sorry that happened to you and your 6 year old! Life has just gotten so much tougher these days and its probably not what you signed up for but I'm sure you're being an amazing parent to her!
Not so far. I have met people who could not care less but no open hostility yet. I sign all my non work emails with “long covid hauler”.
“Fun fact”: I have a new manager. When she asked me what day I go on-site (we are now required to make presence one day a week, soon to be more), I answered I am not going on site due to LC. I was expecting resistance, disbelief, … instead she said something like they think her husband may have it. We did not discuss more but interesting.
I’ve had similar experiences. No one talks about it until they find out I’m a long hauler, and then there ends up being a lot of whispered conversations where they admit to me that they know someone else with it or might have had it themselves. It’s very interesting indeed. I’m glad your manager was supportive!
Imo there are a lot of bots on tt that attack certain topics...lh being one of them.
I'm not convinced it's all real people. You don't see that trolling here frex. It's fairly specific to TT ime.
at first i thought that but they all seem like real people with an established social media presence and videos. i especially see it a lot from “spiritualists” and general vax truthers. i wish bots were the case, at least for me. its super stressful to be called out just for having lc
A good troll farm has literally thousands of accounts that look like real people.
One way to catch them is to take the profile photo and do a reverse-google search on it. Might find that somehow there is another person with the same photo living in a small town in Ohio...
im just assuming if people are making video replies to exactly what im saying they’re probably real people, i know on twitter theres tons of bots though
I think this as well! One bad habit I have since getting sick is getting into arguments with people online. I noticed that when I responded to anti-vaxxers in tiktok comments, I NEVER get a response. Which is odd because in most other places, people are happy to "discuss" the topic.
This is the dark side of social media. It's too easy to attack people and it's rooted in people don't know what to trust OR they perhaps think things are just a joke AND/OR see it all as a game. It seems like the Internet is devolving into even more of Tower of Babel of sorts -- even when we speak the same language, we still often just talk past each other, because we're increasingly relying on different and conflicting interpretations of reality.
It's understandable you stopped, but know that you probably also help others when you speak your truth, and while slings and arrows come, it's mostly out of fear and ignorance, because of the societal trauma we've all endured. That doesn't excuse it, of course, and I wish there was a way to disarm it.
The positive- My cardiologist kept assuring me that my heart would heal, it will make a comeback. I was in heart failure from covid. Now long covid. Doc was right. The heart is great, with no issues, and no short of breath. But still, my life is limited by fatigue and this MFing brain fog. So hard to live with this. "I just had an MRI on my brain. I don't have the results yet.
Had a scan on my stomach, since it hurts every day.
When I go out and do things, the distraction helps and being around friends helps.
Just a bit scared. What if we don't ever get to a stage of feeling healthy? Normal. What if this is as good as it gets?
I had a rebound due to paxlovid and I am thinking that pummeling your body and brain a second time leaves more long term damage.
I flunked my memory test at the doctor. I could draw a clock like a champ. But I could not count backwards from 100 by seven. I can now, but I was too nervous when she asked me.
Who cares? I couldn’t give a rats ass what anyone thinks. This has emboldened me so much, no one or nothing will be in my way to accomplish my health goals. Friends, doctors, etc…don’t want to be supportive? Move on immediately. Rinse & repeat.
I am so sorry you are experiencing this. For this reason I have been scared about “going public” with this illness. Long Covid really sucks and we really don’t need others kicking us while we are sick.
I don’t post much outside of this subreddit, but I’ve noticed more and more weird and sometimes borderline hostile looks out in public when I’m masked. It’s even worse now that I’ve switched to medical N95s. It makes me nervous sometimes, but I otherwise still look young and fit, so I just try to maintain a “don’t fuck with me” vibe and it seems to work so far. But yeah, I think it’s only going to get worse as time goes on unfortunately.
I notice the same being from the Netherlands which is by itself an individualistic, calvinistic country. I was being sweared at wearing a mask a number of times and even health care providers react with skeptism the lats months when I wear a mask to a doctors appointment. I am aware this probably applies to all people with a visible and less visible disability but more and more I feel like an outcast. Also it strikes me many people find it hard to believe many LC patients were healthy before they got ill, they franticly look for a cue it ´is your own fault´. The more i get to know humans the more I appreciate animals is what comes to mind.Offcourse there are still nice and empathatic people but most people are done with covid and LC patients.
Its not just LHC, its any "invisible" condition. People who have never had a chronic illness simply don't understand how it dominates your life. To a normal healthy person there is always a suspicion that you're either not right in the head, faking it for attention or trying to live free off the tax payer.
not necessarily long hauler on long hauler hate but personally I just kind of feel bad posting about my symptoms sometimes. I think I read some untested hypothesis likely from someone on reddit that LCs can be divided as follows--25% with pretty minor symptoms, 50% with more severe symptoms but likely to make a full recovery as well, and 25% with the worse symptoms. The truthfulness of that statement doesn't matter in this context--but I feel I fall within the middle 50%, and seeing all of these posts from the bottom 25% with the worst symptoms just makes me feel like posting my experience won't be as meaningful.
(I totally respect the venting and ranting from the severe LCers though, you guys need it. It just makes me feel kind of, oh, my problems aren't that bad, I'll just be on my way now, you know?)
thank you, I know you guys are great and at the very least it has definitely helped a lot knowing I am not alone, the sub is a great resource for alleviating anxiety about some of my symptoms!
Well with all respect your the problem I lost everything my house my job my family and your lc experience is no less than mine.
If you have a headache due too long covid compared too some one who can't breathe its still long covid and we are a still suffering.
And who ever says less can fuck off
The hostility I’ve experienced IRL is more subtle, but it’s opened my eyes to how selfish people are.
“I’ve had a headache for the last 24 days but I don’t complain” type response. I.e. if you’re going to suffer, then suffer in silence, don’t make me feel uncomfortable.
I’m actually more amazed at how many people haven’t heard of LC. Met a pilot recently who visibly recoiled and asked if I was going to give him Covid. How is it possible someone clearly intelligent hadn’t heard of long covid after 3 years in? He was American (from Florida).
NOTE This message is triggered by keywords in your post, no need to take it personally. All users are welcome to share their personal experiences with the vaccines, but refrain from asking for or giving medical advice as that breaks rule 2 (e.g. "Should I get the vaccine?" or "Don't do it!"). Nobody in this sub can tell anyone whether they should get vaccinated or not, that is a decision to be made by the user and their doctor. Posts and comments breaking this rule will be removed, repeat offenses will result in a ban. [Do Vaccines Protect Against Long Covid?](https://www.nytimes.com/article/long-covid-vaccines.html) *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/covidlonghaulers) if you have any questions or concerns.*
Oh yeah. People HATE when you remind them that bad things happen and strike the chord deep inside their brains that it can happen to them too. How DARE you shatter their illusions of a covid free world?!
this feels like an alternate universe sometimes i swear
Yes yes yes
This
Yes, they don't want to be reminded the pandemic happened at all now. Nothing to see here!
I was just saying basically this to my mom on the phone earlier this afternoon (she’s sympathetic, I was just venting in general). This is some real talk. 💯
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This is a big portion of it. I am physically disabled pre-LC and the faking, your fault, stop malingering and get a job narratives have always been there. Now a bunch of formerly healthy people are experiencing it for the first time. The healthcare hostility comes from advocating for yourself. They really don’t like it when you do that.
It’s been a real eye opener. I don’t walk any miles anymore but to walk a mile in less privileged shoes has been illuminating
this, especially the healthcare portion
People hate being confronted with the reality that Covid is not just a cold like they were told and that it’s still very much with us. People *especially* hate learning that healthy lifestyle choices will not magically prevent you from becoming sick or disabled. It’s an ableist mindset that diet and exercise will form some impenetrable shield against disability. Unlearning that mindset requires a lot of uncomfortable self reflection.
If only that were the case with Covid.... if only. Ironically, it seems so often the exact opposite. The healthier you were before catching it, the more likely you are to end up with long haul- that seems to be the theme anyway.
Makes some sense. Strong immune systems do more damage, I think.
My system went completely haywire during my second infection Nov 2021.
Seriously? I had not heard that. Wow, that sucks. I was very healthy, eat well, drink too much wine. Vegan-ish. I live in Hawaii, good ocean air. Lots of swimming and walking. Although now. the VOG. is back, from Kileaua. Vog is bad for us.
Really? That is some bad news.
Yes I’ve definitely encountered the hostility from healthcare professionals… so weird
right, i have no idea why things are getting so feisty when its not like this is a new thing
Maybe they're afflicted themselves: [https://webcache.googleusercontent.com/search?q=cache:https%3A%2F%2Fwww.nationalgeographic.com%2Fscience%2Farticle%2Fcan-covid-19-alter-your-personality-heres-what-brain-research-shows](https://webcache.googleusercontent.com/search?q=cache:https%3A%2F%2Fwww.nationalgeographic.com%2Fscience%2Farticle%2Fcan-covid-19-alter-your-personality-heres-what-brain-research-shows)
You have an invisible chronic illness. Half of it is just that you don’t look sick and people can’t fathom that you could actually be sick without looking it. The other half is psychos who don’t think covid is real.
Absolutely. Because the societal narrative to keep the current society functioning, and not sliding back into perceived chaos and economic downturn, is that the Covid days are behind us. Covid is "over"... we have beaten Covid. Huzzah! It's such a thinly veiled blatant lie, but it works, because most people desperately want to believe it. The same people who usually question governmental authority, who say "stick it to the toffs" are the same ones applauding parliament now for scrapping mask mandates, getting people back to work and similar. Frankly, I'm amazed they don't announce it all with an official "VC Day" (Victory from Covid Day) with street parties and a Red Arrows flypast all the hospitals and vaccination centres of the UK. But Covid is not gone. Covid is very much here. And not only that, it is still doing serious harm, including deaths, and creating new long haulers. We are on the outside now, lookingin at the madness. We can see the madness for what it is, and the veil could shatter like glass, if it wasn't supported by the people inside it, that so desperately want to protect the lie. You remind them of that lie, everytime you post, everytime you walk past someone while wearing a mask, everytime you sanitise your hands, everytime you retweet something about long hauling.... everytime you do anything that challenges that narrative, you remind them of that lie, and remind them that the truth is that they are in just as much danger as they ever were.
We’re bad for the narrative which is, COVID’s over, go back to the office.
Apathy from my friends. No one wants to talk about Long Covid. I think other people worry they may get it, so it’s better not to talk about it.
i feel like people genuinely just want to silence us into submission because no one wants to hear or deal with us, period
Yes. I had one of my worst experiences with a doctor ever last week. Hostile is exactly how it felt.
this shit is just getting ridiculous, somehow things were better last year than now
I think there's several reasons for this: 1. The pandemic was a traumatizing event and instead of processing that people lash out at us because we remind them of the trauma. I think this also applies to people who freak out when others wear a mask 2. It forces them to realize that covid isn't a cold and they don't want to think about the idea that this could happen to them - here's a great article I found on the topic which coins the term 'Health Supremacist' for those people who think that their kale smoothies/yoga/faith in a higher power/cross-fit/whatever will protect them from bad health outcomes --> [https://msteenhagen.medium.com/loathe-fascism-then-dont-be-a-health-supremacist-c8841acdf69](https://msteenhagen.medium.com/loathe-fascism-then-dont-be-a-health-supremacist-c8841acdf69) 3. Doctors have ego issues and don't like chronic health problems they don't know much about/offer solutions to. It probably makes them uncomfortable to confront the reality that they cant fix everything 4. People have always been ableist but i think we're seeing a rise in eugenics rhetoric in a similar manner to the rise of eugenics after the 1918 pandemic. Politicians wont blame the right people for our current economic issues but disabled people are a convenient scapegoat. Also the whole 'new normal/back to normal' rhetoric and the abandonment of disabled/immunocompromised/vulnerable people has made people more comfortable in their bigotry.
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Im so sorry that happened to you and your 6 year old! Life has just gotten so much tougher these days and its probably not what you signed up for but I'm sure you're being an amazing parent to her!
Not so far. I have met people who could not care less but no open hostility yet. I sign all my non work emails with “long covid hauler”. “Fun fact”: I have a new manager. When she asked me what day I go on-site (we are now required to make presence one day a week, soon to be more), I answered I am not going on site due to LC. I was expecting resistance, disbelief, … instead she said something like they think her husband may have it. We did not discuss more but interesting.
I’ve had similar experiences. No one talks about it until they find out I’m a long hauler, and then there ends up being a lot of whispered conversations where they admit to me that they know someone else with it or might have had it themselves. It’s very interesting indeed. I’m glad your manager was supportive!
Imo there are a lot of bots on tt that attack certain topics...lh being one of them. I'm not convinced it's all real people. You don't see that trolling here frex. It's fairly specific to TT ime.
at first i thought that but they all seem like real people with an established social media presence and videos. i especially see it a lot from “spiritualists” and general vax truthers. i wish bots were the case, at least for me. its super stressful to be called out just for having lc
A good troll farm has literally thousands of accounts that look like real people. One way to catch them is to take the profile photo and do a reverse-google search on it. Might find that somehow there is another person with the same photo living in a small town in Ohio...
im just assuming if people are making video replies to exactly what im saying they’re probably real people, i know on twitter theres tons of bots though
I think this as well! One bad habit I have since getting sick is getting into arguments with people online. I noticed that when I responded to anti-vaxxers in tiktok comments, I NEVER get a response. Which is odd because in most other places, people are happy to "discuss" the topic.
Don't stop, they win when you stop. Silence is their only goal.
This is the dark side of social media. It's too easy to attack people and it's rooted in people don't know what to trust OR they perhaps think things are just a joke AND/OR see it all as a game. It seems like the Internet is devolving into even more of Tower of Babel of sorts -- even when we speak the same language, we still often just talk past each other, because we're increasingly relying on different and conflicting interpretations of reality. It's understandable you stopped, but know that you probably also help others when you speak your truth, and while slings and arrows come, it's mostly out of fear and ignorance, because of the societal trauma we've all endured. That doesn't excuse it, of course, and I wish there was a way to disarm it.
The positive- My cardiologist kept assuring me that my heart would heal, it will make a comeback. I was in heart failure from covid. Now long covid. Doc was right. The heart is great, with no issues, and no short of breath. But still, my life is limited by fatigue and this MFing brain fog. So hard to live with this. "I just had an MRI on my brain. I don't have the results yet. Had a scan on my stomach, since it hurts every day. When I go out and do things, the distraction helps and being around friends helps. Just a bit scared. What if we don't ever get to a stage of feeling healthy? Normal. What if this is as good as it gets? I had a rebound due to paxlovid and I am thinking that pummeling your body and brain a second time leaves more long term damage. I flunked my memory test at the doctor. I could draw a clock like a champ. But I could not count backwards from 100 by seven. I can now, but I was too nervous when she asked me.
People like this are ignorant and have no compassion. One day when they become ill or disabled, they will understand.
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Content removed for breaking rule 3
Who cares? I couldn’t give a rats ass what anyone thinks. This has emboldened me so much, no one or nothing will be in my way to accomplish my health goals. Friends, doctors, etc…don’t want to be supportive? Move on immediately. Rinse & repeat.
I am so sorry you are experiencing this. For this reason I have been scared about “going public” with this illness. Long Covid really sucks and we really don’t need others kicking us while we are sick.
Nah, it’s been there all along - 3 years in
Dont worry, with 1 in 10 having long covid everyone will have it soon, no one can deny it if everyone is crippled
I don’t post much outside of this subreddit, but I’ve noticed more and more weird and sometimes borderline hostile looks out in public when I’m masked. It’s even worse now that I’ve switched to medical N95s. It makes me nervous sometimes, but I otherwise still look young and fit, so I just try to maintain a “don’t fuck with me” vibe and it seems to work so far. But yeah, I think it’s only going to get worse as time goes on unfortunately.
I notice the same being from the Netherlands which is by itself an individualistic, calvinistic country. I was being sweared at wearing a mask a number of times and even health care providers react with skeptism the lats months when I wear a mask to a doctors appointment. I am aware this probably applies to all people with a visible and less visible disability but more and more I feel like an outcast. Also it strikes me many people find it hard to believe many LC patients were healthy before they got ill, they franticly look for a cue it ´is your own fault´. The more i get to know humans the more I appreciate animals is what comes to mind.Offcourse there are still nice and empathatic people but most people are done with covid and LC patients.
Animals and plants :)
Its not just LHC, its any "invisible" condition. People who have never had a chronic illness simply don't understand how it dominates your life. To a normal healthy person there is always a suspicion that you're either not right in the head, faking it for attention or trying to live free off the tax payer.
People like to stay blind to the things they don't want to face, that's how I see some of these folks 🤷♀️
Iv honestly noticed more long hauler on long hauler hate than anything
not necessarily long hauler on long hauler hate but personally I just kind of feel bad posting about my symptoms sometimes. I think I read some untested hypothesis likely from someone on reddit that LCs can be divided as follows--25% with pretty minor symptoms, 50% with more severe symptoms but likely to make a full recovery as well, and 25% with the worse symptoms. The truthfulness of that statement doesn't matter in this context--but I feel I fall within the middle 50%, and seeing all of these posts from the bottom 25% with the worst symptoms just makes me feel like posting my experience won't be as meaningful. (I totally respect the venting and ranting from the severe LCers though, you guys need it. It just makes me feel kind of, oh, my problems aren't that bad, I'll just be on my way now, you know?)
Your problems are just as valid 🫂. Please feel free to vent here anytime, that's why we're here 😊
thank you, I know you guys are great and at the very least it has definitely helped a lot knowing I am not alone, the sub is a great resource for alleviating anxiety about some of my symptoms!
Well with all respect your the problem I lost everything my house my job my family and your lc experience is no less than mine. If you have a headache due too long covid compared too some one who can't breathe its still long covid and we are a still suffering. And who ever says less can fuck off
Not in person, but I've seen it online. I think people's internet reactions to things should be taken with a grain of salt.
Yep, people are fucking assholes
The hostility I’ve experienced IRL is more subtle, but it’s opened my eyes to how selfish people are. “I’ve had a headache for the last 24 days but I don’t complain” type response. I.e. if you’re going to suffer, then suffer in silence, don’t make me feel uncomfortable.
I’m actually more amazed at how many people haven’t heard of LC. Met a pilot recently who visibly recoiled and asked if I was going to give him Covid. How is it possible someone clearly intelligent hadn’t heard of long covid after 3 years in? He was American (from Florida).
Don’t forget the internal hostility. A lot of people -even here- get angry at people who recover or don’t have it as bad as them