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'.
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.
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.
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.
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.
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...
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.
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 💕
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 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'.
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.
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.
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.
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.
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.
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!
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...
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.
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 💕
Humans are a failed species😞 Instead of adapting to survive, we're committing suicide😕😷
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 thought I had long covid. Turned out I developed Amyloidosis.