Do you really think I want to be doing all this?

Spoiler alert: absolutely not

Photo by engin akyurt on Unsplash

I have never hated the Americanized version of the question “How are you?” more than I do nowadays. “Fine,” I typically answer, though inside, I am anything but.

The problem is, no one actually cares, and no one really wants to listen to the real answer. But the truth is, I’m not “fine.” Things are not okay. And I can’t even fake it anymore.

I have always been really good at pretending things are okay (thank you childhood and adult trauma). If there were an Oscar for getting through life causing as few ripples as possible, always putting others’ comfort first, convincing everyone you have it together and that you were *fine,* honey, I’d take home the prize.

The problem is, at some point, all that comes to a head. No one can method act for that long without suffering the consequences.

No person can keep all that bottled up inside for that much time.

Sometimes people go on a retreat and find themselves. The (figurative) mask drops a bit. Or they experience a massive burnout from work and completely redefine their lives because they realize they can’t live this lie anymore. The mask is stored on a shelf for now.

Or in my case, they become afflicted with a debilitating chronic illness (actually make that at least three - Long Covid, ME/CFS, and now POTS) which completely upends their life quite un-consensually and unexpectedly. It turns them into a new person. The old them has died, and a new, very different person has been born in their place. The mask simply no longer fits.

Masking (i.e., acting in ways that are not natural to your true behaviors) for such sustained periods of time will inevitably have (self-)destructive outcomes.

Many of us who have acquired disabilities (later in life especially) experience these changes as a profound loss of self/identity/connection with the world, which comes with immense grief. I’ve talked before about where I am in the five stages of grief, and right now, I’m somehow jumping back and forth between depression and anger. This grief touches every single part of my life, so I guess I shouldn’t be too surprised how intense and all-encompassing the reaction is, and how much the mask doesn’t fit anymore (figuratively of course; my N95s do fit me well).

While I absolutely did not sign up for this, I have finally realized (a little too late), that living as if Covid is over won’t be doing me any favors. Burying your head in the sand won’t save you.

If anything, not taking precautions against Covid puts me at repeated and increased risk for long-term damage (to add on top of my Covid-caused pulmonary, immuno-, vascular, neurological, mitochondrial, and other systemic damage) and potentially death (especially given my demographics)).

So what have I gone back to doing? I mask everywhere. And not just the surgicals. I now wear a N95 mask nearly everywhere (and a KN95 at home since I live with family members who refuse to take precautions). For the first few years of the pandemic, I regrettably wore baggy blue surgicals and cloth masks. I didn’t know better. I finally switched to KN95s, but for a long time, I was rewashing them because I wanted to be more eco-friendly. I had no idea that that effectively rendered them useless. The CDC wasn’t doing me or any of us any favors by not sharing the information we needed.

I started developing Long Covid symptoms in the beginning of January 2021 after my first infection, and things only got worse after my second infection in July 2022. Yet I didn’t change much about my habits because I didn’t know. I didn’t know that yes Covid really does transmit outdoors; that it can travel farther than six feet; that surgicals and cloth masks don’t protect us against airborne particles; that repeated infections will slowly destroy you and your body and cause long-term harm to your immune system; that infections can trigger other chronic illnesses (like POTS and ME/CFS); that so many people can be asymptomatic; that mild cases can still lead to Long Covid. The list goes on.

Once things started getting really bad, I did actively continue to wear KN95s on all public transport and in medical settings. I reduced social interactions, especially indoors. But it wasn’t enough. Because I was still putting myself at huge risk, but also others around me.

I finally had my “come to Jesus” moment last fall. I’m embarrassed it took almost five years to become this Covid Conscious but I’m (angry/sad/grieving/upset/proud/exhausted/relieved/so many other emotions) that I’m finally here now.

I’m happy I finally saw the light, but I fucking hate it here.

Do you know how exhausting it is to have to wear a mask every day, especially in your own home? To have to always have to be on alert in case someone harasses you or assaults you because of your mask. To be asked or told “so how long are you gonna wear that thing,” “what’s that shit on your face,” “you should take that off,” “are you gonna wear a mask forever,” and “those don’t protect you” on a near daily basis. To request and confirm ADA accommodations for masking in advance, and yet have healthcare workers ignore your request, despite it being against the law. To not be able to date, because no one wants to date someone who’s still masking. To be stared at, ostracized, ridiculed, and shunned from public spaces.

Many think it’s my “choice” to wear a mask. I’ve even had people close to me call it my “lifestyle.” But wearing a mask isn’t a choice when the alternative is getting even more sick and more disabled and potentially dying. Why would anyone want that, especially when there is a relatively simple way to prevent that?

It’s a “choice,” sure, but at the end of the day, it’s really not. It’s my health. It’s my life. It’s my survival.

One day I’ll write a post about all the awesome things masks do for me.

But today is not that day.

I don’t want to have to mask. I don’t want to have to think so hard about keeping myself safe. I don’t want to carry the mental, emotional, financial, and logistical burden of this CC “lifestyle.” It is NOT fun - especially when less than 1% of the population is doing this with you and everyone else dismisses you.

Do I blame them? Yes and no. No, because there are some extreme institutional failures that went down over the last five years (which I also fell victim to too). But yes, because when my close friends and family still make fun of me, refuse to protect me, and flat out ignore that I’m fighting for my life every day - despite having seen what Covid has done to me / my health / my career / my spark - I just find it quite hard to forgive, be the bigger person, and have compassion in response.

I am not having any fun. I am not okay. The CC “community” is not okay.

The abandonment of our family, friends, neighbors, coworkers, doctors, and society writ large has destroyed many of us emotionally and mentally, me included.

Trying to be CC in a world that politicizes masks and pathologizes their wearers is exhausting, heartbreaking, and soul-sucking.

As

Harmony King

said, “if you’re not masking because you think you’ll get judged or left out of certain things, I can assure you that you’ll hate what happens to your social life if you acquire a post-viral disability like Long Covid.”

The first part (getting judged and left out) sucks, but the second part (Living with Long Covid™) sucks way more. Take it from me,

M (is) Living with Long Covid

. It’s so bad that I write a whole blog about it.

Every day, I risk harassment, exclusion, mockery, judgement, scorn, disdain, threats, assault, and more. You think I want to be subjecting myself to these things on a daily basis? Don’t you think that I maybe have a good reason to still persist with my mask wearing despite these risks? Don’t you think that you too could develop Long Covid like me? I was an athlete before. I climbed volcanoes. Flew around the world. Danced. Lived life. And now I don’t. I can’t.

I thought I was special. I wasn’t. You aren’t either. None of us are. As I’ve said before, Covid is an equal-opportunity destroyer of lives. Why else do you think I’m doing all this? It certainly isn’t for fun.

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.