Yes. You do. This Long Covid Awareness Day I want to talk about the reasons why many people don't realize they have Long Covid, as well as why others choose to hide their diagnosis.
I think a few of my friends have Long COVID but they can’t even entertain the possibility — they would rather not know. It’s surreal to mask around them as they cough, fumble to remember words, get fatigued…but they don’t mask themselves unless it’s “for me.”
Surreal is an excellent word! That's exactly how I feel. People will tell me they're 'fine' and pity me for being chronically ill... meanwhile they've got brain fog, fatigue, infections, persistent cough and are very clearly not 'fine'.
I agree it's concerning! It's also frustrating because we are refusing to learn from our past mistakes. We saw the way this played out in the 80s and there's absolutely no reason we shouldn't be applying the Precautionary Principle and trying to protect as many people as possible right now.
This really rings true for me. I don't think I know anyone in my circle who officially has long covid. But I have a lot of close family and friends who are much more frequently sick and/or tired than they ever used to be by a long shot. And covid never gets talked about...
Yep, that seems to be the way it is for many of us. No one is 'officially' identifying as having Long Covid but almost everyone is sicker than they used to be and still taking no precautions.
So many great points, as usual. Just like how the vast majority of people have had COVID (many asymptomatically), you could throw a rock and hit someone with LC. If 400m around the world are thought to have it, we ALL know someone with it, whether we know we know it or not. I agree!
And thank you for including my Long COVID in Pictures post here. Much appreciated!
I’m so tired of hearing people say they don’t know anyone with long covid when we know there are millions upon millions of cases.
The denial and stigma is so strong that we’re ignoring a huge problem, and the irony is we’re simply creating more long covid patients the longer we remain in denial.
Great piece! I've never had covid because I was already housebound with ME/CFS by the time the pandemic hit. Sending solidarity. At first I thought long covid would refresh research into ME/CFS and decrease its stigma. But instead of most people realizing their ableism upon seeing a huge number of people become disabled and becoming more compassionate, they began to stigmatize long covid too. I didn't realize the extent before reading your piece. Thank you.
Hi Tai! Thank you for reading. I actually thought the exact same thing about ME/CFS, POTS and MCAS. I figured we would see better treatments and maybe even a cure.
I really didn't think we would ignore a problem this large and double down on the stigma. It's been incredibly disappointing and it's one of the reasons I started doing advocacy. I want to keep raising awareness in the hopes that eventually those of us with complex chronic illnesses are treated better.
It is incredibly disappointing how averse to adaptation we've turned out to be. People seem to think it's unending lockdowns or repeat Covid infections and no middle ground. They don't understand that with some modifications we could all be much healthier!
Thanks for including Matt McGorry's video. I poked around and found the second video that he mentions; that one is definitely worth a watch too.
I keep masking in public, and I'm glad to do it to keep myself and my family (including my parents and other relatives in their 80s) as safe as possible. It's wild to me how people apparently don't factor Long COVID into their risk assessment.
I was honoured to include it, I think he did a fantastic job explaining the stigma and why people can't admit they have it. He's doing fantastic advocacy work!
Thank you as well for masking, I agree it's strange that people aren't factoring Long Covid into their risk assessment. They think about whether they will die and that's it. Since most people have had Covid at least once, there's heavy survivorship bias as well.
“The people being diagnosed with rare fungal infections, tuberculosis, whooping cough, RSV and other conditions at more frequent rates.” I didn’t realise all these were up but I know people who have been diagnosed and I was surprised to hear of it!
“The people blaming all manner of health issues on ‘aging’ even though they’re under the age of 40.” Oh my god, don’t even get me started on this. When my health was deteriorating and I was struggling in all areas of my life but with one that was obvious was exercise, people were telling me it was my age!!! I was 36.
I have face blindness now and struggle to remember names in ways I didn’t before 2018 (all non covid related). It’s frustrating mentioning it to people because they immediately say it’s my age (I was 38 when it started).
What I’ve noticed with chronic illness is that we’re all keeping quiet about it (until we aren’t). I did for 20 years until I couldn’t hide it anymore. I’ve met so many fellow chronic illness warriors and no one knows their struggles. They keep it hidden. Family think they’re making it up if they do say anything.
I always say to people now “when they say they wake up feeling like they’ve been run over by a truck, believe them”.
Like you say with hiv/aids, what’s happening with Covid isn’t anything new. We’ve always done this. Othered. Disbelieved. Dismissed. Denied. Created stigma. Where will it end?
That's exactly it. We all keep quiet until we can't anymore... then we often get very loud lol. We're almost pushed into advocacy because absolutely no improvement has been made with respect to the stigma associated with chronic illness.
I hope things change soon. It's frightening seeing the increase in diseases associated with compromised immune systems and no one connecting the dots.
People keep saying they're 'fine' without considering that your immune system doesn't 'hurt'. It doesn't give you a big warning sign that something is wrong, and the specialized testing that is given to patients with HIV is very hard for most other people to access.
So for all we know folks are walking around severely compromised and just don't know it.
Advocacy is essential. To me, a lot of the last resorts should be the first port of call. Though I’ve been feeling anger and sadness recently over the past 2 years research I’ve been doing to find out about where I’m at now. But I think that’s because last year I found out all elements of research I’ve done have been known about for many decades - we’ve just chosen not to educate our healthcare professionals on any of it.
I do believe in change. But I also believe that much of it will come from us.
I can’t speak for anyone else but I know for me it had to be complete disability by illness. I wasn’t gonna change before then. I want that to be different for others but I also appreciate what it takes to wake up to it all and how deeply conditioned we are by the media and society at large. Especially to think that everything’s fine when it isn’t and that there’s help there when you lose your health.
Like everyone else, I never thought this would happen to me. And if it did, I believed our healthcare system was there to get to the root of it and help support you back to wellness!! Though I’m glad I remained true to the belief this was possible, what a shock I got!
Fellow Long Hauler here. Still masking, eating in and not out, and trying not to get another infection to take me back to where I started in October 2021! I would love to travel and eat in a restaurant again, but it’s not safe for me to do so. So I have become a cook and prepare meals for my bubble who still masking for me 💕
I'm so glad you've got a bubble of maskers! That can make such a difference! I wish we had made the effort to make indoor activities safer, but the longer people remain in denial the more people like us have to isolate. Dreadfully unfair really.
Thank you for reading and commenting Nancy! I really hope this helps people understand that long covid is real, it’s devastating, and people do hide their diagnosis. They need more support so they don’t have to hide.
Before-times friends have occasionally told me about people with odd, long-lasting symptoms. But they never say Long Covid, nor would they ever admit to having any symptoms themselves. I am the one and only person they know who has not returned to 2019 and they've made it pretty clear that they don't want to spend much--or any--time with me. I'm just so "risk averse" or simply a downer. No fun to be around.
Since my kids are grown (and don't have their own children) and most of my friends are 60+ and having the time of their lives (or so they want me to see on Facebook), I can honestly say that I don't know anyone who has Long Covid. At least no one who would dare tell me!
I feel that comment deep in my bones. I've noticed folks seem to be really making an effort to curate their social media to show that they're having the time of their lives, and I often wonder if they're overcompensating because they're sick.
I'm sorry you're the last person in your circle still taking precautions, I know how hard that can be!
Oops. Sorry about the misspelling! Arg. It should have read “no one.” As for being the last in my circle, well, at least my partner’s on the same side. Our social life is almost dead, but hey, we’ve still got our health!
I have EBV, and have had it since I was 19, so I get it. No one believes you. It's all in your head. Even when they finally got a test for it, my doctor was still skeptical. And she was a she! This is why I still mask, make my friends eat on the patio at a restaurant if they want to eat out with me, wear a mask in the office when someone has travelled (including the big wigs from NYC coming to town...sorry, not sorry), because I have to keep my NOVID status (being an anti-social introvert has its perks I guess). I have my EBV fairly under control (it will flare just to remind me it's still around and has some power), but I am terrified of getting long COVID. I remember crying because I couldn't get out of bed to go to work, after spending the day in bed trying to get energy to go to work at 20, 21. Missing school because it was more important to go to work. I don't want to go back to that, because I'm it! If I'm not bringing in the dough, there is no bread. My heart breaks for you and everyone else suffering from LC. Thanks for shining the light, BBT. xo
Thank you for raising awareness and sharing invaluable resources. I never considered what it meant for someone to 'come out' as having long COVID, but I know the stigma I've experienced for admitting to being afflicted would make others think twice about disclosing.
We're already seeing funding for various long COVID research and advocacy projects getting cut, but it looks like mobilizing support has helped some grants get reinstated. Upwards and onwards!
I think a few of my friends have Long COVID but they can’t even entertain the possibility — they would rather not know. It’s surreal to mask around them as they cough, fumble to remember words, get fatigued…but they don’t mask themselves unless it’s “for me.”
Surreal is an excellent word! That's exactly how I feel. People will tell me they're 'fine' and pity me for being chronically ill... meanwhile they've got brain fog, fatigue, infections, persistent cough and are very clearly not 'fine'.
Very concerning to see the similarities between the public response to Long Covid and AIDS/HIV
Thanks as always for this enlightening yet concerning information,
Bob
I agree it's concerning! It's also frustrating because we are refusing to learn from our past mistakes. We saw the way this played out in the 80s and there's absolutely no reason we shouldn't be applying the Precautionary Principle and trying to protect as many people as possible right now.
This really rings true for me. I don't think I know anyone in my circle who officially has long covid. But I have a lot of close family and friends who are much more frequently sick and/or tired than they ever used to be by a long shot. And covid never gets talked about...
Yep, that seems to be the way it is for many of us. No one is 'officially' identifying as having Long Covid but almost everyone is sicker than they used to be and still taking no precautions.
So many great points, as usual. Just like how the vast majority of people have had COVID (many asymptomatically), you could throw a rock and hit someone with LC. If 400m around the world are thought to have it, we ALL know someone with it, whether we know we know it or not. I agree!
And thank you for including my Long COVID in Pictures post here. Much appreciated!
You’re so welcome!
I’m so tired of hearing people say they don’t know anyone with long covid when we know there are millions upon millions of cases.
The denial and stigma is so strong that we’re ignoring a huge problem, and the irony is we’re simply creating more long covid patients the longer we remain in denial.
Great piece! I've never had covid because I was already housebound with ME/CFS by the time the pandemic hit. Sending solidarity. At first I thought long covid would refresh research into ME/CFS and decrease its stigma. But instead of most people realizing their ableism upon seeing a huge number of people become disabled and becoming more compassionate, they began to stigmatize long covid too. I didn't realize the extent before reading your piece. Thank you.
Hi Tai! Thank you for reading. I actually thought the exact same thing about ME/CFS, POTS and MCAS. I figured we would see better treatments and maybe even a cure.
I really didn't think we would ignore a problem this large and double down on the stigma. It's been incredibly disappointing and it's one of the reasons I started doing advocacy. I want to keep raising awareness in the hopes that eventually those of us with complex chronic illnesses are treated better.
Humans are a failed species😞 Instead of adapting to survive, we're committing suicide😕😷
It is incredibly disappointing how averse to adaptation we've turned out to be. People seem to think it's unending lockdowns or repeat Covid infections and no middle ground. They don't understand that with some modifications we could all be much healthier!
It really is. Exactly!
Thanks for including Matt McGorry's video. I poked around and found the second video that he mentions; that one is definitely worth a watch too.
I keep masking in public, and I'm glad to do it to keep myself and my family (including my parents and other relatives in their 80s) as safe as possible. It's wild to me how people apparently don't factor Long COVID into their risk assessment.
I was honoured to include it, I think he did a fantastic job explaining the stigma and why people can't admit they have it. He's doing fantastic advocacy work!
Thank you as well for masking, I agree it's strange that people aren't factoring Long Covid into their risk assessment. They think about whether they will die and that's it. Since most people have had Covid at least once, there's heavy survivorship bias as well.
Thanks for another great piece, and for the mention!
You're welcome! It was my pleasure to include your excellent piece on masking, I'm still hoping it convinces a few more people to mask back up.
“The people being diagnosed with rare fungal infections, tuberculosis, whooping cough, RSV and other conditions at more frequent rates.” I didn’t realise all these were up but I know people who have been diagnosed and I was surprised to hear of it!
“The people blaming all manner of health issues on ‘aging’ even though they’re under the age of 40.” Oh my god, don’t even get me started on this. When my health was deteriorating and I was struggling in all areas of my life but with one that was obvious was exercise, people were telling me it was my age!!! I was 36.
I have face blindness now and struggle to remember names in ways I didn’t before 2018 (all non covid related). It’s frustrating mentioning it to people because they immediately say it’s my age (I was 38 when it started).
What I’ve noticed with chronic illness is that we’re all keeping quiet about it (until we aren’t). I did for 20 years until I couldn’t hide it anymore. I’ve met so many fellow chronic illness warriors and no one knows their struggles. They keep it hidden. Family think they’re making it up if they do say anything.
I always say to people now “when they say they wake up feeling like they’ve been run over by a truck, believe them”.
Like you say with hiv/aids, what’s happening with Covid isn’t anything new. We’ve always done this. Othered. Disbelieved. Dismissed. Denied. Created stigma. Where will it end?
That's exactly it. We all keep quiet until we can't anymore... then we often get very loud lol. We're almost pushed into advocacy because absolutely no improvement has been made with respect to the stigma associated with chronic illness.
I hope things change soon. It's frightening seeing the increase in diseases associated with compromised immune systems and no one connecting the dots.
People keep saying they're 'fine' without considering that your immune system doesn't 'hurt'. It doesn't give you a big warning sign that something is wrong, and the specialized testing that is given to patients with HIV is very hard for most other people to access.
So for all we know folks are walking around severely compromised and just don't know it.
Advocacy is essential. To me, a lot of the last resorts should be the first port of call. Though I’ve been feeling anger and sadness recently over the past 2 years research I’ve been doing to find out about where I’m at now. But I think that’s because last year I found out all elements of research I’ve done have been known about for many decades - we’ve just chosen not to educate our healthcare professionals on any of it.
I do believe in change. But I also believe that much of it will come from us.
I can’t speak for anyone else but I know for me it had to be complete disability by illness. I wasn’t gonna change before then. I want that to be different for others but I also appreciate what it takes to wake up to it all and how deeply conditioned we are by the media and society at large. Especially to think that everything’s fine when it isn’t and that there’s help there when you lose your health.
Like everyone else, I never thought this would happen to me. And if it did, I believed our healthcare system was there to get to the root of it and help support you back to wellness!! Though I’m glad I remained true to the belief this was possible, what a shock I got!
Fellow Long Hauler here. Still masking, eating in and not out, and trying not to get another infection to take me back to where I started in October 2021! I would love to travel and eat in a restaurant again, but it’s not safe for me to do so. So I have become a cook and prepare meals for my bubble who still masking for me 💕
I'm so glad you've got a bubble of maskers! That can make such a difference! I wish we had made the effort to make indoor activities safer, but the longer people remain in denial the more people like us have to isolate. Dreadfully unfair really.
It sure helps to have two people who believe and believe in me!
I know at least two people with Long COVID. It's very real and can present with different symptoms. Thanks for writing this comprehensive piece.
Thank you for reading and commenting Nancy! I really hope this helps people understand that long covid is real, it’s devastating, and people do hide their diagnosis. They need more support so they don’t have to hide.
Thanks for the mention 🫂
You're so welcome! I wasn't sure if you would get a notification or not so I'm glad you did!
Before-times friends have occasionally told me about people with odd, long-lasting symptoms. But they never say Long Covid, nor would they ever admit to having any symptoms themselves. I am the one and only person they know who has not returned to 2019 and they've made it pretty clear that they don't want to spend much--or any--time with me. I'm just so "risk averse" or simply a downer. No fun to be around.
Since my kids are grown (and don't have their own children) and most of my friends are 60+ and having the time of their lives (or so they want me to see on Facebook), I can honestly say that I don't know anyone who has Long Covid. At least no one who would dare tell me!
"At least know one who would dare tell me!"
I feel that comment deep in my bones. I've noticed folks seem to be really making an effort to curate their social media to show that they're having the time of their lives, and I often wonder if they're overcompensating because they're sick.
I'm sorry you're the last person in your circle still taking precautions, I know how hard that can be!
Oops. Sorry about the misspelling! Arg. It should have read “no one.” As for being the last in my circle, well, at least my partner’s on the same side. Our social life is almost dead, but hey, we’ve still got our health!
I thought I had long covid. Turned out I developed Amyloidosis.
Oh wow! I'm glad they found it, I know that one often goes undiagnosed/misdiagnosed as well. Are you doing better now?
Halfway through chemo. Doing better is relative, happy to be alive.
I have EBV, and have had it since I was 19, so I get it. No one believes you. It's all in your head. Even when they finally got a test for it, my doctor was still skeptical. And she was a she! This is why I still mask, make my friends eat on the patio at a restaurant if they want to eat out with me, wear a mask in the office when someone has travelled (including the big wigs from NYC coming to town...sorry, not sorry), because I have to keep my NOVID status (being an anti-social introvert has its perks I guess). I have my EBV fairly under control (it will flare just to remind me it's still around and has some power), but I am terrified of getting long COVID. I remember crying because I couldn't get out of bed to go to work, after spending the day in bed trying to get energy to go to work at 20, 21. Missing school because it was more important to go to work. I don't want to go back to that, because I'm it! If I'm not bringing in the dough, there is no bread. My heart breaks for you and everyone else suffering from LC. Thanks for shining the light, BBT. xo
Thank you for raising awareness and sharing invaluable resources. I never considered what it meant for someone to 'come out' as having long COVID, but I know the stigma I've experienced for admitting to being afflicted would make others think twice about disclosing.
To mark Long COVID Awareness Day, I shared a new platform I created to help patients and caregivers access vital resources called the Spooniverse Directory: https://www.nitajain.com/p/international-long-covid-awareness
Apart from that, I decided to share a bit of my personal story as a long hauler:
https://www.nitajain.com/p/confessions-of-a-covid-long-hauler
We're already seeing funding for various long COVID research and advocacy projects getting cut, but it looks like mobilizing support has helped some grants get reinstated. Upwards and onwards!