I Don't Know Anyone With Long Covid
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.
Every day I hear someone proudly proclaim “I don’t know anyone with Long Covid!” They say it’s a ‘liberal disease’. That it’s made up. It’s caused by the vaccine. It’s all in their heads. They construct all kinds of excuses to deny the fact that we are in the middle of a mass disabling event that has already impacted 400 million people.
You think you don’t know anyone with Long Covid? You do. I promise you. It might even be you.
I don’t say that to be dramatic. I say it in an attempt to bring people back to reality. To yank them out of the denial bubble that has kept them safe and warm for the last five years.
We have to leave denial behind and be willing to face this problem head on, or we will never solve it.
Long Covid is not rare. It’s not limited to ‘only the vulnerable’. People of all ages, walks of life and health status are dealing with this debilitating condition. If you know more than a handful of people, odds are you know someone battling Long Covid.
There’s a myriad of reasons you may not realize you know someone with Long Covid. The most likely is that they’re choosing not to tell you. Long Covid, like many chronic illnesses, is invisible. You won’t know someone has it unless they choose to disclose it.
Disabilities carry stigma, they always have. Many people keep their illnesses to themselves, or only confide in a few close trusted friends. This stigma is amplified in the case of Long Covid because the condition has become highly politicized.
If you’re someone who believes you don’t know anyone with Long Covid, ask yourself this… are you the type of person who would be safe and understanding if someone shared their diagnosis with you? Are you open to learning and understanding more about it? Or do you walk around mocking people who are sick and accusing them of faking?
The answer might give you a clue as to why people aren’t sharing their health information with you.
Image Description: A grey and teal ribbon is seen on a dark grey background. Text reads International Long Covid Awareness
What Is Long Covid?
First things first, there are a lot of misconceptions about what Long Covid actually is. It’s still a relatively new condition, despite us being five years into the Covid pandemic.
In the lifespan of a novel virus, five years is not a very long time. We learn more about what this virus can do to the body every single day, but it may be many more years before we understand the true scope of long term implications.
We don’t even have a general agreed upon definition for Long Covid, and many healthcare workers fail to recognize and diagnose the condition.
I’m going to do my best to explain it the way I understand it, but will add a caveat that things are constantly changing. We may learn tomorrow that Long Covid is actually something different than what we understand it to be today.
This novelty, the fact that SARSCov2 is a new virus that we’ve never encountered before, is perhaps one of the best reasons we should all be taking precautions to avoid repeat infections.
We don’t yet know what will happen after 2, 5 or 10 infections. What we do know, is not encouraging.
Long Covid is a chronic illness that develops after having a Covid infection. The initial infection is often defined as ‘mild’, and yet in the weeks and months that follow patients report a decline in their health.
They have fatigue, persistent infections, cardiac issues, new onset allergies, generalized pain, brain fog and more.
Many will be diagnosed with related comorbids like POTS/Dysautonomia, MCAS (Mast Cell Activation Syndrome) or ME/CFS.
There’s also mounting evidence of immune system dysregulation, which could lead to patients getting sick more often and with diseases we would normally only see in the immunocompromised.
For a more in-depth look at what Long Covid is, how it’s defined and diagnosed, I highly recommend
’s deep dive article below. Remember, the only way to avoid Long Covid is to avoid getting Covid in the first place.
Novel Viruses and the HIV/AIDS Pandemic
As I mentioned above, five years is nothing in the lifespan of a brand new virus. The precautionary principle should be applied to protect our long term health, yet most people abandoned it years ago.
Some folks get upset at comparisons to the HIV/AIDS pandemic, but it was also a novel virus and it was years before we understood how deadly it was. I’m not comparing diseases, but their novelty and political response.
In the early days of the HIV/AIDS pandemic, the government did very little to protect people. Activists had to fight for years in order to receive proper healthcare, recognition, insurance and treatment. It was seen as a ‘gay disease’ and as a result, folks didn’t care that it was killing people.
In many ways we have a similar response with Long Covid because it’s seen as a condition only impacting the ‘vulnerable’. Those people who were probably going to die anyways. Not actively contributing to society. Not worth saving.
We’ve all heard “Your health is not my responsibility!” as a way of justifying not taking Covid precautions. Vulnerable people have been told to ‘stay home forever’. If someone dies, the first question that’s asked is ‘how many comorbids did they have?’
Society is collectively refusing to acknowledge that Long Covid can and does impact everyone. No one is safe. It just takes one infection to completely disable you, and you never know which infection will be the one where your luck runs out.
In the early days of the AIDS pandemic, no one knew that all cases of HIV would turn into AIDS and that AIDS would be 100% fatal (thankfully current treatments allow HIV+ patients to lead long healthy lives). It took nearly a decade for science to catch up to what was happening. For people to accept and understand that prevention was key. That HIV could infect anyone and wasn’t limited to a specific group of ‘others’.
Science moves faster these days, but we’re still only five years in to the Covid pandemic. I’m not saying I believe Long Covid will be fatal, I’m saying we have to be humble enough to admit that we don’t know everything yet, and we should be taking all available precautions to avoid infection.
Could I Have Long Covid?
Yes, you could.
I’ve noticed a strange phenomenon going on in the world of chronic illness. People don’t WANT to be diagnosed. They ignore very real physical symptoms and tell themselves they’re ‘fine’. Or they actively seek out doctors who will tell them it’s anything other than Long Covid.
I’m reminded of a young woman who posted a TikTok video after being diagnosed with Functional Neurological Disorder (FND). She was thrilled to find out it wasn’t Long Covid.
This is in no way meant to downplay those dealing with FND or insinuate it’s not a serious medical condition, but rather to call attention to the depths of fear and denial surrounding Long Covid. In the past, most people wouldn’t want to have FND because it’s difficult to treat and carries a stigma.
Now we have people excited by the diagnosis, or ANY diagnosis, as long as it’s not Long Covid.
For those who aren’t aware, FND is often referred to as a conversion disorder. It’s not well understood, there are a lot of biases around the condition and therapy is generally the only available treatment. Many patients with serious physical conditions get worse because they were falsely labeled as having FND.
It’s not something you want to have in your chart unless your medical team are 100% certain they’ve ruled out all other causes for your symptoms, because once an FND diagnosis is made it becomes much harder to get physical ailments taken seriously.
Yet this woman was elated. She was relieved. She was celebrating her diagnosis and blissfully unaware of the challenges she would face down the road because of it.
Ask yourselves why that is? Why would someone be happy to receive a diagnosis that’s known to complicate medical care? Could it be that the stigma and fear associated with Long Covid is so severe that people are convinced having FND is better?
Or perhaps it’s because if you’re diagnosed with Long Covid you will feel pressure to adapt your behaviour. If the Covid virus is what destroyed your health, it becomes harder to deny the harm of repeat infections. You are forced to confront the fact that this is not a mild virus, that infections do not make you stronger, and that in order to avoid getting sicker you have to make behavioural changes.
People would rather go to therapy once a week and be told their condition is ‘all in their head’ than wear a mask or give up indoor dining. They would rather be sick all the time than modify their behaviour in any way.
They’re happy in their denial bubble. They want the comfortable lie. It keeps them warm at night knowing that they don’t have to change their behaviour and that those first few months of the pandemic were just a bad dream that is long over. They don’t want to go back.
The problem is, Covid doesn’t care what you want. It never has.
It doesn’t care that you think it’s over. It doesn’t care that you believe it’s not a threat because you’re ‘young and otherwise healthy.’ It doesn’t care about your political stripes, your vaccination status or your comorbids. It just wants hosts to infect. And we are giving it way too many opportunities.
If you’re still not convinced that you know someone with Long Covid, I encourage you to think about all the people who are complaining about being sick all the time. Lamenting how fatigued they are, or that they can’t taste and smell their food the way they did before.
The people who have heart disease, diabetes, blood clots and strokes in their twenties and thirties. The people being diagnosed with rare fungal infections, tuberculosis, whooping cough, RSV and other conditions at more frequent rates.
The people blaming all manner of health issues on ‘aging’ even though they’re under the age of 40. I see this all the time. People who are clearly experiencing chronic illness and yet refuse to see a doctor because they say they’re just ‘getting older.’
We are normalizing being sick, fatigued and in pain. People seem incapable of remembering that before Covid most of these symptoms would result in a trip to see a doctor. They wouldn’t be easily blamed on aging or menopause or ‘working too much’. We blame serious physical symptoms on these things so we don’t have to face the truth… it might be Long Covid.
We will even blame illnesses on lockdowns that ended four years ago. There’s no end to the wild and ridiculous rationale we will use to avoid considering that someone might have Long Covid.
Lastly, even for those who are willing to admit they might have Long Covid, there are significant barriers to diagnosis. Long Covid clinics are few and far between, and many refuse to implement masking policies so patients aren’t able to access them without risking reinfection.
Patients without insurance may not be able to afford a diagnosis. Those with an existing chronic illness, disability or mental health condition are likely to have their Long Covid blamed on their pre-existing condition or psychologized.
Misdiagnosis and gaslighting have always been common where complex and invisible chronic illnesses are concerned, but it’s particularly egregious with Long Covid. Getting diagnosed is an uphill battle.
All of this leads to a population of people who either don’t realize what they’re suffering from is Long Covid, can’t get diagnosed with Long Covid and/or don’t believe Long Covid even exists.
People are getting sicker and sicker, at increasingly younger ages, and we still can’t get them to take the elephant in the room seriously.
For more, check out this video by actor Matt McGorry on his ‘coming out’ as a person with Long Covid. He brings the receipts while explaining the stigma associated with the condition and why he took so long to admit he had it:
Pandemics and Trauma Responses
The pandemic was traumatic for everyone. Seemingly overnight people had their sense of safety ripped away. They watched as friends or loved ones died, businesses closed, healthcare became overwhelmed and millions became chronically ill.
Trauma is not an easy thing to deal with. Having to cope with the fact that there was this virus that could take your life at any time was rightfully frightening to people.
Unfortunately, instead of opting to adapt and put in place measures like clean air, better testing and masks in healthcare, most of society has opted for denial instead. This denial has in many ways broken us, because it’s providing a false sense of security.
People are moving through life as though the pandemic is over (even though the World Health Organization has been clear that it isn’t), but they’re getting sick more often. They’re missing more work. They’re forgetting things. They don’t ‘feel right’ anymore.
This cognitive disconnect is not only damaging, it’s dangerous. It leads people to continue to neglect the very real threat and thus risk their health over and over again. Many have decided that masks are useless political virtue signals, clean air isn’t necessary and Long Covid is fake. Even as they suffer from Long Covid themselves.
These false beliefs have only added to the tremendous stigma people with Long Covid face. All of them are easily debunked, but people cling to them because it allows them to go back to their 2019 version of ‘normal’. It gives them permission to pretend as though nothing has changed. To refuse to adapt.
It helps them feel superior to those with Long Covid and the Covid Cautious, writing both groups off as hypochondriacs and/or fear mongerers.
One thing is clear, people can and will do anything if it means they don’t have to endure discomfort or change their behaviour.
We’ve seen mask bans, reductions or eliminations in sick leave policy, increasing ableism and attacks on people with disabilities and the rise of anti-vaxx, anti-science people like RFK Jr.
Most people won’t even say the word Covid anymore, and few say Long Covid either. We blame people who are chronically ill. Tell them they need to ‘try harder’. We chastise those still masking, criticize clean air and Covid competent advocates and continue to bury our heads further and further in the sand. We refuse to face the problem.
As a result, we see more and more Long Covid. More deaths. More trauma. We’re stuck in a never ending cycle of death and loss that we won’t ever break out of until people start facing reality and adapting their behaviour.
How Can We Deal with Trauma and Support People with Long Covid?
First things first, you can wear a mask. Don’t ever underestimate the power of masking up to show solidarity with vulnerable people and those suffering Long Covid.
By wearing a well fitted mask like an N95, you’re not only protecting your own health, you’re protecting the health of everyone around you. If you need help choosing a mask or want to learn more about respirators, check out my article below:
Other important steps you can take to curb the spread of Covid include ventilating and filtering indoor air, testing, staying home when sick and staying up to date on vaccinations. A layered strategy works best, and the more you can do to stop transmission, the better off those with Long Covid will be.
Next, help eliminate the stigma facing those with Long Covid and other invisible illnesses. Be a safe person that others can confide in so they don’t feel like they have to hide.
We need visibility to overcome the stigma associated with Long Covid, but we also need it to help the public realize this is not a small problem. It’s a disease impacting people all around the world, young and old, previously healthy and not.
I was chronically ill prior to Covid, and looking back I’m embarrassed by how long it took me to publicly admit I was disabled. The fear I had about sharing it is an indictment of how cruel people can be. Folks love to preach tolerance and acceptance, but few actually practice it in real life.
Then there’s the extra challenge of admitting you have Long Covid because it forces others to focus on a period in their lives they’re desperately trying to forget. It’s hard to cling to the denial narrative that Covid is ‘over’ or ‘mild’ if you’re face to face with someone who’s health has been destroyed by the virus.
I lost many friends and loved ones when they found out I was sick. Some losses were immediate and brutal, people who carelessly tossed me by the wayside because they instantly put me into the “less than” category.
Other losses were slower and more painful, because they involved false hope. They were the ones who stuck around at first, who applauded me for telling them the truth and offered help and support.
The ones who showed up and helped, until they stopped. Almost everyone stops eventually.
I wish more people would understand how quickly support disappears when you don’t “get better.” Even those who say they’re going to stick around eventually grow tired of the fact that you’re “always sick.” They grow bored of you. One by one they disappear.
If you’re also trying to get them to wear a mask? Reminding them that perhaps it’s not as ‘safe’ out in public as they’ve been led to believe? You’re going to find they disappear even faster.
It ends up being a lonely life, and our refusal to deal with the airborne spread of Covid has only made it even more isolating.
Even those lucky enough have people stick by them have to constantly assess whether they might pose an infection risk. Whether they’re actually willing to mask, if they’re being honest about their own symptoms and health, or if they might bring Covid into the home and destroy whatever small baseline a person has left.
All these pitfalls and landmines take an incredible amount of energy, and its energy most of us simply don’t have to spare. It’s hard to fault someone for not admitting they have Long Covid when the admission could upend their world.
If you don’t tell others you’re disabled, you can at least TRY and pretend that everyone in your life will stand by you. That they aren’t ableists who view people like us as “less than”. If you tell them the truth you’re risking a tremendous amount of pain.
Once you’ve put that truth out there, once you’ve labelled it as Long Covid, you will find people stop calling. They stop visiting. They unfriend and unfollow. They do whatever they need to do to avoid facing the fact that the virus they believe to be ‘mild’ or ‘over’ has left someone they care about disabled.
They run from any reminder of the pandemic, and sadly those with Long Covid are one of the starkest reminders there is. As a result folks with Long Covid and related chronic illnesses slip away. Quietly disappeared from people’s lives. Ghosted, ignored and forgotten. As
so eloquently put it, ‘we are made invisible’.So the best thing you can do to support people with Long Covid is to make them visible. Help make everyone living with chronic illness visible. Help us find the courage to speak our truth and tell the world just how sick we really are.
Show us we don’t have to hide. We don’t have to plaster a smile on our faces and say we’re ‘fine’ when we’re anything but. We don’t have to play through the pain.
Recognize and accept that your desire to cosplay 2019 “normal” has caused many of us tremendous harm, and make a commitment to put aside the comfortable lie and start taking Covid seriously.
Lobby governments and public health for better treatments and mitigations. Help us fight for mandatory masking in healthcare settings. Demand more research into Long Covid treatments and cures. Wear a mask and stop the spread.
Keep us safe, help prevent new infections, and support us in becoming more visible. We don’t want to hide anymore.
In summary, to help support those with Long Covid and those trying to avoid getting Long Covid, here are some things you can do:
Wear a mask, ideally an N95 or better
Donate to or support your local mask bloc
Give to mutual aid and help those with Long Covid access tests, masks, treatments and medical care
Clean the air
Avoid crowded indoor gatherings, open windows and ventilate spaces
Wear masks in healthcare, especially if you’re a healthcare worker
Stay home when you’re sick
Engage with Long Covid organizations who are trying to spread the word about the debilitating nature of this virus
Call your elected officials and tell them you want transparency with respect to Covid and Long Covid. Tell them to admit it’s airborne and fund mitigations, tests and treatments
Admit to yourself that Covid is still here and still a threat. Once you realize the risk, you can begin to heal from the trauma and adapt to keep yourself and others safe
Some Covid and Long Covid related reads that I recommend:
Everything That Friend Wants You To Know About Covid by
Why Are People Wearing Masks in 2025? by
Let Them Eat Old Vaccines and Plague by
Why I’m Grateful to my Long Covid by
- and Wendy Green
Covidlandia Begins Again January 2025 by
What Would An Adequate Covid Response Look Like? by
I’m sure I’ve missed lots of posts and people, but the above are a great place to start! If you have a favourite article, writer or post about Covid or Long Covid, make sure to leave it in the comments so others can find it!
Do you have Long Covid? What are you doing to mark Long Covid Awareness Day? If you have another invisible chronic illness, have you noticed a change in the way people treat you since the Covid pandemic began?
Please share in the comments below, and if you found this article helpful please give it a ‘like’. It helps more people find me and my content!
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.”
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!