Previously I wrote about my least favorite question as a (relatively newly) disabled person (“How are you?”), but today I want to talk briefly about my second least favorite question that I often hear as a disabled person who is also Covid Conscious.
Because most people now only see me with a mask on (either a KN95 or N95), I frequently get asked “When are you going to stop masking?” by family, friends, and even my doctors treating me for Long Covid.
I think they mostly think this question is innocuous. Maybe it’s just a way to make conversation or small talk. Or maybe they are concerned about my mental health (they should be, but not for the reasons they think).
In fairness, it may be especially jarring for them to see me like this now because I wasn’t always this strict in terms of my masking. I only really re-upped my masking game in a very universal and “strict” way last fall (previously, once things had “relaxed” (which obviously in retrospect was completely false), I had only kept wearing masks on public transport, planes, exercise classes, and medical settings).
So, believe me, I can understand that for many of the people in my life, me masking again all of the time and everywhere (even in my own home) are confused by my “sudden” about-face, and are genuinely wondering if this is going to be a lifelong thing, or if I’ll eventually lose interest. I admit it’s very hard (as I’ve talked about before) to mask in nearly all places and at all times, but I know that the alternatives are far worse.
But back to the question in question.
Please, take a moment, and step into my shoes.
You’re in your early thirties. You (thought you) had your whole life ahead of you, but you got infected with a disease that could have been prevented with better public health information/protocols and wearing a better mask (or frankly wearing a mask at all). Now, you now can only work 30% of the time, if you’re lucky. You have to be self-employed since no employer will let you work that little and give you benefits. You have to pay for your own health insurance. You are chronically fatigued. You suffer from over 70 symptoms in varying levels of severity and dynamism. You feel like you’re slowly developing dementia thanks to the brain damage from the virus. You’ve lost friends who no longer believe you, support you, or care. You have to stay home most days. You have to lay down most days. You canceled plans for grad school, despite getting accepted with a massive scholarship. You can’t continue your many hobbies. Society makes fun of you and thinks your illness is in your head. Most of the world outside your home is inaccessible to you. You can no longer really travel for fun. You can’t date. No one wants to be in a relationship with someone who hasn’t “moved on” from Covid. Every ‘outing’ or hang-out requires careful planning and logistics. You have to remind (read: beg) your friends to test for you every time you see them. Life (for me) in a mask, chronically ill, and disabled, is living in a perpetual nightmare.
So when I’m asked “When are you going to stop masking?”, this is what I actually hear:
“How long do you plan on being disabled?”
“How long do you plan on not getting sick from completely preventable diseases?”
“How long are you going to make me jump through hoops before seeing you (like taking rapid tests or PCRs)?
“How long do you plan on caring about others in your community?”
I recognize that the original intention may be pure (though really, it feels like the question is predicated on the notion that this is a phase or that I’m making my illness up), nevertheless, the impact is anything but.
This question lacks empathy for what I and many other people who continue to take precautions against Covid and other communicable, airborne illnesses (measles, anyone?) go through on a daily basis.
It’s also insulting because I have educated myself so thoroughly and extensively on Covid’s effects on the body and know exactly what I’d be risking by not masking. At this point, I’m fully confident that I know more about Covid than probably 80-90% of doctors and nurses in the U.S.
[Spoiler alert: Covid can and does affect nearly every system in our bodies. Long Covid comprises over 200 debilitating symptoms. Long Covid is not curable. Covid can permanently disable and kill us. Repeated infections can permanently damage our immune systems and make us more susceptible to disease going forward.]
I wear a mask because I am informed about the risks of Covid. And because I am actively not ignoring the science and my own lived reality, which is telling us in abundantly clear terms that Covid wreaks havoc on all we hold dear - our brains, our hearts, our physical bodies, our energy, our dreams, and more.
“But what if Covid is finally eradicated? Or they find some way to stop its spread?”
Okay, that would be fantastic. But I know too much now. I know that so many spaces are inaccessible to many disabled and immunocompromised people (like me). I know that even passing on a cold or the flu to someone like that could kill them. I also recently learned that Long Flu exists, and that many people can get post-viral infections after an acute illness that can leave them disabled for life.
Would I continue to wear a mask if Covid fully disappears or its transmission can be 100% blocked? I think I’d probably relax a bit (maybe I’d go back to indoor dining for instance), but at the same time, we also have measles and bird flu - both of which can be spread by airborne particles.
As I’ve said before, I hate wearing a mask everywhere and all the time.
And as I’ll say today, I hate the question “when are you going to stop masking?”
I’ll stop masking when our society takes science seriously again. In other words, when pigs fly.
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.
For my whole life I have gotten sick every 2-4 months. It turns out I have selective IgA deficiency, which can be found out in simple blood test but no one tested me till last year.
As a result, I have autoimmune conditions that can be quite severe and pre-Covid ME/CFS and now Long Covid… but I’ve had exactly ONE cold in the last five years. One case of RSV from my kid’s school - despite her vigilant masking. That’s it.
Ironically I am so much more healthy as far as NOT getting acute infections — because of masking and everyone in my household and polycule masking. I don’t want that to change. When I get acutely ill, it’s a real setback for my chronic woes.
So why would I stop masking????
I never stopped masking 😷