On the fifth anniversary of the pandemic

Some thoughts from my various stages of grief

Photo by Griffin Wooldridge on Unsplash

A friend asked me this week what I was going to write for Long Covid Awareness Week (currently going on to mark the five year trauma-versary of the Covid-19 pandemic) and today, which is officially Long Covid Awareness Day. Even despite getting tons of emails about it from different organizations I subscribe to, it didn’t really register to me. I didn’t even consider writing something because…who cares?

Don’t get me wrong - I care deeply about Long Covid, I care deeply about helping to prevent others from developing Long Covid (please wear a mask!), and I care deeply about my Long Hauler community. But for the rest of it, I’m utterly exhausted and demoralized. Long Covid consumes my life but I hardly want to talk about it anymore because either that’s all I talk about with friends who are in the same boat as me, or everyone else who doesn’t have it and/or takes no precautions thinks I’m out of my mind and irrational.

In the five stages of grief, I feel like I am simultaneously experiencing life in the anger, bargaining, and depression stages. How pleasant. I hope to one day find acceptance, but it’s hard, especially when the world has moved on without you.

Though I was admittedly pretty late to the re-masking/Covid Conscious game (after unmasking (for the most part) starting in late 2021), many activists well before me - both disabled and able-bodied - had been begging the world to listen to them. They’ve been begging everyone to wear a mask - not just to prevent Long Covid in themselves, but also to help keep the air clean for others who maybe can’t wear a mask, or who are immunocompromised and even more susceptible to Long Covid. No one listened. I didn’t either and here I am. Most people continue refusing to listen.

Now over one in five Americans probably has some form of Long Covid, but it’s still not enough because most people are in denial and/or don’t make the link to Covid.

[As an aside, I did go to a webinar this week about Covid and Long Covid. A very well-known epidemiologist who has been at the forefront of Covid (and many other infectious diseases) admitted he had LC symptoms for over six months and yet he didn’t realize for the longest time that they were likely related to Covid. He was in denial and/or completely disconnected from the fact that this virus is still incapacitating people. If this man - who literally helped shape the Covid response in the U.S. - didn’t make the connection, I’m not sure how “regular” folks are supposed to.]

I wear a mask nearly everywhere I go, but I always get asked or told “why do you mask?” (by doctors even; specifically a doctor at a literal Long Covid study), “are you sick?”, “No, I’m not going to mask for you,” “You’d breathe better without it,” and “If you believed in yourself and your body, you wouldn’t need to wear that anymore.”

I try to share evidence-based information with family and friends on the dangers of Covid and the horrors of Long Covid. I share how masks are amazingly effective tools to keep us safe. I share articles and journals. No one cares. No one believes me or the science. Or if they do believe it, they “prefer to keep [their] head buried in the sand” and ignore the evidence (literally a direct quote from a close family member).

While I am immensely proud of myself (and frankly all CC people) for going against the grain and literally against the public opinion of the masses (no small feat), being the only masker in 99% of spaces has taken a massive psychological and emotional toll. I will not stop (unless they finally develop some kind of nasal or other vaccine that prevents all transmission), but I am pretty demoralized.

I’m sick of feeling like a conspiracy theorist for continuing to take covid-safe precautions. I’m sick of people telling me they’re “pro-science” but flat out ignore and refute said science. I’m sick of trying to make people care about me and other disabled people. I’m sick of feeling like an outcast. I’m sick of feeling so lonely. I’m sick of all of it.

I’ve had the privilege to never really feel that “othered” in a tangible sense throughout my life (though I have felt a lot of otherness because of my neurodivergence and queerness, the reality is my privilege as a white woman has made my life much easier than most peoples’), but this particular challenge that I am trying to endure keeps destroying me with a million little cuts on a daily basis.

I am ostracized, vilified, judged, misunderstood, othered, ignored, avoided, and more. All because I wear a mask so that I don’t get sick again, and so that I can help prevent others from getting sick too. Is that so wrong?

I wish I had something inspirational and optimistic to write for Long Covid Awareness week, but when I see Facebook groups and Reddit communities full of fellow Long Covid Long Haulers who actively refuse to mask - I feel defeated and deflated. If we - the disabled survivors of this awful virus - won’t even take the obvious and “easy” precautions to prevent ourselves from getting even more disabled and/or dying, how in the world will we convince anyone else? We know exactly how we got Covid and developed Long Covid, so why are we living in denial and not wearing a mask?

We are not hypochondriacs. We don’t have anxiety (well some of us do, but it’s not related). We are not “crazy” or “insane,” as you call us. We are not conspiracy theorists. We are not extremists for wearing masks. We are taking perfectly rational and appropriate precautions in response to a still very much ongoing pandemic, for which we already know (from decades of research) how to respond to.

It’s so painful, disorienting, destabilizing, frustrating, and isolating to live as a Covid Conscious person in this timeline. Trying to live and survive, when truly the majority of society (and the world) thinks you’ve lost your mind is a trial I would wish upon no one.

I’m proud of our steadfastness as a community, despite the immense social and institutional pressure telling us on a daily basis that we are wrong, deranged, and delusional. But we are not okay. I am not okay.

Despite my anger, grief, and frustration, I won’t stop writing about Long Covid (plus I’m too lazy to change my handle on Substack), so you’re stuck with me for now. But I’d love for the messages of the Covid Conscious community to somehow reach the masses, especially before it’s too late.

Note: Most of what I write is stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.