It's 2026 and the Covid pandemic rages on despite many pretending it no longer exists. Today is a day to remind people of the disabling nature of the virus and how they can protect themselves.
I've had CFIDS/ME since 1985. It's sad that so little progress has been made for people living with invisible chronic illness. Getting a diagnosis is still an uphill battle. Getting family and friends to accept that you have a genuine, physical disease and that there are no treatments available and that you are never getting any better is next to impossible. People automatically blame you for being ill or accuse you of faking it because that's easier to accept than realizing that they could also become disabled or die at any time, no matter how "good" they are. Everyone has an excuse for why it's not their responsibility to help in any way. (The fact that you are still a human being should be enough reason to help, or at least try to not make your situation any worse.)
In some ways, the situation is actually getting worse for disabled people. More and more government programs are facing budget cutbacks or have been eliminated altogether. It can take decades of fighting the system to finally get an accessible apartment, a wheelchair or other mobility aids. Many medications and medical devices that used to be covered by insurance are now unaffordable.
At least, here in Canada, we still have government medical insurance, but many people in the USA have no insurance at all, so they are never going to get a diagnosis if they are too sick to work. Even Canada's universal healthcare doesn't cover the cost of getting a doctor to fill in application forms for disability benefits, time off work and so on. Many medications aren't covered by insurance.
In short, ableism is rampant and systemic, leaving the chronically ill often living alone and in poverty, on top of having to deal with pain and diminished ability.
I'm a previously very active now 69-year-old. I used to gravel on my boat. Now I have taken a permanent mooring so that I can continue to at least live in my boat.
I've written 3 articles in the last year. If I were able to concentrate as I used to, I would write more. But this is my contribution to the long covid story so far.
Incidentally, I have met many people with long covid, as my local long covid clinic runs an online support group (although they keep getting threatened with being de-funded). Several are/were teachers, one was a paralympian runner, others work/worked in various science/tech occupations, one was a singer. None of us were previously inactive, quite the opposite.
Kelly, I hope you are feeling better. I did a short talk over the phone for the Vancouver group on cardiovascular complications seen in Long COVID. All organ systems complications are rapidly increasing now, sadly. Thank you for more great writing.:))
Long COVID didn’t just steal my health — it carved out deep wells of grief and loss for the life I once had.Yet in the quiet aftermath, I’ve also found fragile threads of hope. In my new piece, I sit with that tension and ask why our healthcare system must do better: moving beyond symptom management to truly support healing and wholeness for every person left behind. This is my honest reflection — not medical advice. If these words echo your own experience, I’d be grateful to hear your thoughts.[https://standingforjesus.substack.com/p/living-with-long-covid-a-personal?utm_source=share&utm_medium=android&r=2l6lsx]#LongCovid #LongCOVIDAwareness
Long COVID didn’t just steal my health — it carved out deep wells of grief and loss for the life I once had.Yet in the quiet aftermath, I’ve also found fragile threads of hope. In my new piece, I sit with that tension and ask why our healthcare system must do better: moving beyond symptom management to truly support healing and wholeness for every person left behind. This is my honest reflection — not medical advice. If these words echo your own experience, I’d be grateful to hear your thoughts.[https://standingforjesus.substack.com/p/living-with-long-covid-a-personal?utm_source=share&utm_medium=android&r=2l6lsx]#LongCovid #LongCOVIDAwareness
When I first read about what COVID was doing to people's bodies it was stunning. Crystalizing blood vessels is how it was described. Now, think on that. Let's say the patient recovers, leaves the care unit then tries to go back to their old life. What percentage of their organs are damaged now, and how long before their body fixes it - or, even worse, what if their body never does?
Welcome to Post Polio Syndrome. I am aware of how it works. I got Polio before the vaccine. Either vaccine. What was known at the time was it attacked the central nervous system. While true, details were unknown
It destroys 95% of the motor neurons. All of them. Now, search to find out where motor neurons are used in your body. Everywhere. They are in your brain to signal via your spinal cord for an arm to move - except it only has 5% of the signalling methods at either end
The Syndrome occurs ~45y later. Some feel like Polio itself comes back. Nope. We are just out of back motor neurons. Meaning several areas have the absolute minimum to function, and some have - none
The only good from COVID was mRNA drug solutions. A brilliant, Nobel Prize winning answer that had been the focus for one woman since the 60s. Katalin Karikó. An amazing woman
I believe there is a possible good outcome from Long COVID. We do not understand exactly what damage viruses can do. We routinely focus on making the patient well, or at least better. But I was a grown man when they figured out that it was going to make my life worse every year. When I was first disabled I got rejected by my insurance for disability. Because most thought it was CFS. Which wasn't covered. Specifically. We changed insurance this year, and Post Polio Syndrome was a simple item on the list of my current medical conditions. Yeah, they know what it is
Maybe, just maybe, we can convince some people, someone like Kirkó to puzzle it out. Why do viruses cause such wide spread damage to the host. How to stop it, how to repair it, at the very least how to educate about it. Sadly, that is best possible outcome - someone, some dedicated scientist will get obsessed to solve it. The US healthcare system of Profit Before All certainly can't be counted on. Or the politicians and our government
Did you or someone you know catch "a flu" and did they wind up in bed, with a high fever? Do they have strange system decades later? Wouldn't it be nice to say, "We know what happened to you." Almost as good as saying, "We are working so it doesn't happen to anyone else"
I’m so appreciative to find your site. I have a neuro degenerative disease and had been extremely careful, masking and hand sanitizing. I had a severe reaction the RNA booster, so was waiting for Novavax. A year ago, before I could get it, a family member came home with Covid, knowing full well I would die or end up in the hospital were I infected. (That was the end of them..) I dropped to 75 lbs and it was touch and go. Because I have so many neurological issues, I don’t believe I was in denial of long Covid, but realized I was getting worse in every way. Night sweats, cough, more tremor, more body dysregulation, sleeping round the clock and never feeling rested, inability to use a computer screen. I send my sincere thanks for all of your research and support. I’m eternally grateful.💕
Thanks for keeping us in the know and trying to share information. I swear most of the world is just content to ignore the fact that covid is still around and is willing us all to pretend it never existed. Why is it so taboo to talk about this disease and not any of the others?
Hugs to everyone. Thank you for your reporting. My mother had had long COVID for. Along time.
I've had CFIDS/ME since 1985. It's sad that so little progress has been made for people living with invisible chronic illness. Getting a diagnosis is still an uphill battle. Getting family and friends to accept that you have a genuine, physical disease and that there are no treatments available and that you are never getting any better is next to impossible. People automatically blame you for being ill or accuse you of faking it because that's easier to accept than realizing that they could also become disabled or die at any time, no matter how "good" they are. Everyone has an excuse for why it's not their responsibility to help in any way. (The fact that you are still a human being should be enough reason to help, or at least try to not make your situation any worse.)
In some ways, the situation is actually getting worse for disabled people. More and more government programs are facing budget cutbacks or have been eliminated altogether. It can take decades of fighting the system to finally get an accessible apartment, a wheelchair or other mobility aids. Many medications and medical devices that used to be covered by insurance are now unaffordable.
At least, here in Canada, we still have government medical insurance, but many people in the USA have no insurance at all, so they are never going to get a diagnosis if they are too sick to work. Even Canada's universal healthcare doesn't cover the cost of getting a doctor to fill in application forms for disability benefits, time off work and so on. Many medications aren't covered by insurance.
In short, ableism is rampant and systemic, leaving the chronically ill often living alone and in poverty, on top of having to deal with pain and diminished ability.
I'm a previously very active now 69-year-old. I used to gravel on my boat. Now I have taken a permanent mooring so that I can continue to at least live in my boat.
I've written 3 articles in the last year. If I were able to concentrate as I used to, I would write more. But this is my contribution to the long covid story so far.
Incidentally, I have met many people with long covid, as my local long covid clinic runs an online support group (although they keep getting threatened with being de-funded). Several are/were teachers, one was a paralympian runner, others work/worked in various science/tech occupations, one was a singer. None of us were previously inactive, quite the opposite.
Travel, not gravel 🙄
Kelly, I hope you are feeling better. I did a short talk over the phone for the Vancouver group on cardiovascular complications seen in Long COVID. All organ systems complications are rapidly increasing now, sadly. Thank you for more great writing.:))
Thanks for including me, and for your work on this!
My adult son has long COVID. Had to take medical retirement from his police detective job.
Awful, I’m sorry.
Thanks.
Long COVID didn’t just steal my health — it carved out deep wells of grief and loss for the life I once had.Yet in the quiet aftermath, I’ve also found fragile threads of hope. In my new piece, I sit with that tension and ask why our healthcare system must do better: moving beyond symptom management to truly support healing and wholeness for every person left behind. This is my honest reflection — not medical advice. If these words echo your own experience, I’d be grateful to hear your thoughts.[https://standingforjesus.substack.com/p/living-with-long-covid-a-personal?utm_source=share&utm_medium=android&r=2l6lsx]#LongCovid #LongCOVIDAwareness
Long COVID didn’t just steal my health — it carved out deep wells of grief and loss for the life I once had.Yet in the quiet aftermath, I’ve also found fragile threads of hope. In my new piece, I sit with that tension and ask why our healthcare system must do better: moving beyond symptom management to truly support healing and wholeness for every person left behind. This is my honest reflection — not medical advice. If these words echo your own experience, I’d be grateful to hear your thoughts.[https://standingforjesus.substack.com/p/living-with-long-covid-a-personal?utm_source=share&utm_medium=android&r=2l6lsx]#LongCovid #LongCOVIDAwareness
When I first read about what COVID was doing to people's bodies it was stunning. Crystalizing blood vessels is how it was described. Now, think on that. Let's say the patient recovers, leaves the care unit then tries to go back to their old life. What percentage of their organs are damaged now, and how long before their body fixes it - or, even worse, what if their body never does?
Welcome to Post Polio Syndrome. I am aware of how it works. I got Polio before the vaccine. Either vaccine. What was known at the time was it attacked the central nervous system. While true, details were unknown
It destroys 95% of the motor neurons. All of them. Now, search to find out where motor neurons are used in your body. Everywhere. They are in your brain to signal via your spinal cord for an arm to move - except it only has 5% of the signalling methods at either end
The Syndrome occurs ~45y later. Some feel like Polio itself comes back. Nope. We are just out of back motor neurons. Meaning several areas have the absolute minimum to function, and some have - none
The only good from COVID was mRNA drug solutions. A brilliant, Nobel Prize winning answer that had been the focus for one woman since the 60s. Katalin Karikó. An amazing woman
I believe there is a possible good outcome from Long COVID. We do not understand exactly what damage viruses can do. We routinely focus on making the patient well, or at least better. But I was a grown man when they figured out that it was going to make my life worse every year. When I was first disabled I got rejected by my insurance for disability. Because most thought it was CFS. Which wasn't covered. Specifically. We changed insurance this year, and Post Polio Syndrome was a simple item on the list of my current medical conditions. Yeah, they know what it is
Maybe, just maybe, we can convince some people, someone like Kirkó to puzzle it out. Why do viruses cause such wide spread damage to the host. How to stop it, how to repair it, at the very least how to educate about it. Sadly, that is best possible outcome - someone, some dedicated scientist will get obsessed to solve it. The US healthcare system of Profit Before All certainly can't be counted on. Or the politicians and our government
Did you or someone you know catch "a flu" and did they wind up in bed, with a high fever? Do they have strange system decades later? Wouldn't it be nice to say, "We know what happened to you." Almost as good as saying, "We are working so it doesn't happen to anyone else"
https://en.wikipedia.org/wiki/Katalin_Karik%C3%B3
I’m so appreciative to find your site. I have a neuro degenerative disease and had been extremely careful, masking and hand sanitizing. I had a severe reaction the RNA booster, so was waiting for Novavax. A year ago, before I could get it, a family member came home with Covid, knowing full well I would die or end up in the hospital were I infected. (That was the end of them..) I dropped to 75 lbs and it was touch and go. Because I have so many neurological issues, I don’t believe I was in denial of long Covid, but realized I was getting worse in every way. Night sweats, cough, more tremor, more body dysregulation, sleeping round the clock and never feeling rested, inability to use a computer screen. I send my sincere thanks for all of your research and support. I’m eternally grateful.💕
Same same. I'm so tired.
Thanks for being out there.
I've always referred to this article when talk gets "political:"
https://www.thegauntlet.news/p/liberals-joined-conservatives-to
Thank you for writing this. Sending blessings your way from another Long Covid survivor!
Thanks for keeping us in the know and trying to share information. I swear most of the world is just content to ignore the fact that covid is still around and is willing us all to pretend it never existed. Why is it so taboo to talk about this disease and not any of the others?
What will they call it when they are affected — a MAGA disease? Many anti-vaxxers didn’t survive Covid, though MAGA tries to hide that fact.
As someone with LC, thank you 💛
In case it is helpful to anyone, I wrote the post linked below a few days ago compiling as much as I could about COVID & LC and their prevention
https://thehotandthedisabled.substack.com/p/things-to-know-about-covid-in-2026