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Disability of Post/Long COVID - article
When I read the linked (below) article, there was so much with which I identified. Why? in Dec. 2024, after nearly 2 years of living with LC, I decided I could no longer work.
Approaching my 78th birthday (observed since) and with a home-based consultancy for nearly 44 years, I loved my work AND could no longer devote the deserved time or energy to clients. It took until this month (May 2025) to announce it via an interview in the industry (hospitality and meetings) in which I work.
The headline of that article was that I was 'retiring' - just like that - because I made it clear that I was fortunate that (so far) I did not have brain fog - and my work is 'brain work'. I noted the project created by a Canadian colleague on which I'll still work.
My other symptoms (constant sore throat, raspy or lost voice - not good for teaching virtually! , hearing loss (now relieved with hearing aides since 1/2025), tinnitus and musical tinnitus, exhaustion, among them) were not mentioned. After it was published virtually, it was evident that most people saw the headline and didn't read more. They congratulated me on my 'retirement'!
Then I read this article - https://tinyurl.com/yphwe3cd - in "The Sick Times", entitled "I want a Long COVID language revolution — not language imposed onto my sick, disabled body", and identified with so much of it.
Why? I am not believed. To see me on Zoom, esp if I put a bit of blush on and am not in my pjs, I look pretty darn ok.
So much continues to evolve around this illness. AND worse, there are new COVID Variants in India, China and the US just as we approach peak travel season in the US and the US Government says masks aren't necessary, nor are boosters and they're even going to curtail boosters to those 65+. Yes, I qualify; those with whom I live do NOT and it's from others attending a meeting/meal, COVID was brought home 3/2023.
Will language for and about us evolve? To the point of being able to explain anything? How do YOU tell people you can't get together because you have NO idea how you'll feel that day? That a shower and dressing to be seen is too much? And no thank you, company, even if they offer to bring lunch, is too much.
I've not found less than blunt words, OR veiled promises of "of course we'll see each other again" knowing unless 85+% of the symptoms go, I can't.
What do you way? How do you explain to family? Friends? Colleagues or formers?
Thanks.
JE
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Hi,
I recommend going to http://www.recovercovid.org
Maybe send it to your friends and family. I tell people that I have an autoimmune disease due to the fact that Long COVID mimics so many other autoimmune diseases and their symptoms. Inflammation is a huge factor (at least for me and others) and something about LC has our bodies fighting themselves. Our immune systems are fighting our immune systems. The website above has studies and results from some of those, as well as opportunities to participate. I also subscribe to "the Sick Times." Continue browsing through the posts on here. There are a lot of folks that talk about symptoms, what helps them, what does not help them and I have found it a great place as it helps me feel not as isolated in this battle of 3 years having LC. Hang in there!
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4 ReactionsAnother thing that I want to share. I always tell people that I am living one day at a time (that is all any of us have) and I have no way of knowing how I am going to feel when I wake up. If they can't understand that, then that is their issue, not yours. Take care of yourself.
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12 ReactionsThis comment resonated with me. It is exactly how I feel...
."Will language for and about us evolve? To the point of being able to explain anything? How do YOU tell people you can't get together because you have NO idea how you'll feel that day? That a shower and dressing to be seen is too much? And no thank you, company, even if they offer to bring lunch, is too much."
You nailed it. I am 70 and have been struggling for almost two years. I may have to give up my intense volunteer work as Vice Chair of a County Political Party (that supports long covid research) I still have hope but it is honestly fading....
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3 ReactionsOh @barbiann - I'm so sorry that you too may have to give up what you love. See if there is a way to still volunteer in some sort of scaled back way. I'm appalled that COVID and Long COVID are taking a BIG back seat on vaccinations just as the spread in Thailand, India, China of the new variant are surging. Summer travel mean that it will shortly be here and w/ vaccine "hesitancy" and the govt. telling us who may and may not be covered by insurance..............
Were it not for this group, I'm unsure how we'd know more.
Here's to your ability to continue somehow.
JE
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1 ReactionThank you, so much, for the link, @diverdown1 , and your perspective. I'm , at 78, an "explainer" because I want people to understand the risks they too are taking by not being vaccinated and not masking and how they put us all at greater risk again -- and others.
I'll read at the link and may make it a standard on my email signature.
One day, in addition to finding now what they believe is a DNA link to who gets LC, they may find things to at least make us comfortable.
JE
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2 ReactionsThank you so much for your compassion and encouragement. This group makes me feel NOT crazy. Others have the same challenges I do and I am glad we can help and support each other.
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3 ReactionsDitto. It is the good thing that I can take to docs to say "it's not just me"!
JE
I hope so. I woke up this morning as I did yesterday morning...fatigued, poisoned and tinnitus. I have days where I wake up and I feel ok, but most days I wake up feeling like sh*t. I have to tell myself that I will feel better as the day goes on and I have to just keep going. Thankfully, today I do not have to be anywhere. I am grateful for that. I know that things could be much worse and that there are people that have it a lot worse than I do and even lost their life (at least on this planet). Thank you for your reply. Strength in numbers, especially those of us that understand. I also feel the need to explain, but most people either do not know what to say or do not seem like they believe me. I realize that they just do not know how it feels. That is what I value about all of you. Thank you.
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1 ReactionI am 54. I know you remember when HIV/AIDS happened. This is similar to that in that no one seems to know what to do, however we do not face the stigma that accompanied that due to people's sexual orientation and it being inaccurately labeled "a gay disease." When I think back I am disgusted with how people were treated. There is research happening, and like you, I hope that we will get some answers.
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2 ReactionsOh I do, @diverdown1 , remember AIDS all too well - too many friends and a family member died of it. Strangely, there is a stigma about Long COVID - as in "were you dumb enough to not get vaccinated or wear a mask?" It's a different stigma. The way people with AIDS were treated was made worse because of the fear "being LGBTQIA" is "catching" from reading books or being around others. That hasn't left. My fear now is of those who refuse to be vaccinated and have no sense of the hell many of us with LC are going through. I fear research and treatment stopping in too many places, and in others never having begun. I am so miserable today that they could offer me anything and I'd take it to relieve the pain.
To better!
JE