Thoughts on Being Chronically Ill During a Pandemic: 2023 Version
The pandemic is not over. Anyone who tells you this is lying. Yes, even the president.
People are still dying. People are still getting sick. People are still developing Long COVID. Disabled people are still feeling abandoned as their worlds shrink.
And masks are still important. Vaccines are too, as are all precautions. But please, even if you are vaccinated, keep wearing a mask.
I haven’t written a blog post about COVID since the beginning of COVID when it was still new and we didn’t know how long it would last or how bad it would be. Not only did I not know about all the deaths that would occur or all the people who would become disabled as a result of COVID infection but I did not know that I would also be experiencing at least 4 years of an ableist response to COVID. I didn’t know how isolating it would be to still care about not getting COVID when the rest of the world moved on. I didn’t know disabled people would be given accommodations they’d long dreamed of, requested, and fought for, only to have these accommodations taken away or devalued the minute the rest of the world decides they are once again too burdensome or unnecessary. I didn’t know the head of the CDC would say that it’s encouraging that most of the deaths occurred among disabled people or in her words people who had multiple comorbidities.
Much of what I’m going to say has already been said before. It is the same stuff many chronically ill and disabled people have said again and again throughout this pandemic. The fact that I know there is still a need for it to be said by more people is a testament to how little many non-disabled people have been listening to us. Listening to other disabled and chronically ill people throughout this pandemic is something that has allowed me to feel less alone in my rage and loneliness and to still feel some semblance of hope.
One product of navigating a pandemic as a "chronically ill but not technically immunocompromised person" is feeling like I have to justify my reasons for being so cautious. I'm sure immunocompromised people experience this to some degree as well. While we don't owe anyone an explanation of the medical conditions that lead to our caution and fear, I'll give mine anyway. I have multiple chronic illnesses. At any given moment, a virus or other illness could trigger a flare-up of any of my conditions. Like most people with chronic illnesses, I prefer to avoid flares at all costs, because they are absolute Hell. I also do not want long COVID on top of all the other illnesses I already try hard to manage. And then, there is the unknown. I don't know how my body would respond to the coronavirus. I also don't know if it's possible that I already had coronavirus in January of 2020 - in which case, no thank you, I would prefer not to experience that again.
Here is how my experience went at first: With every day that passed I hoped that it would end soon but I knew it wouldn’t. I knew it wouldn’t because I could tell within a month or so that too many people did not want to change their lives in any way to avoid COVID and avoid spreading it to the more vulnerable people. They didn’t want to wear masks, some didn’t even want to get vaccines, and of course others simply didn’t want to maybe go out a little less during surges. Originally, liberals scolded republicans as anti-maskers and COVID minimizers - then they became anti-maskers and COVID minimizers themselves. They thought having a vaccine meant that they never had to wear a mask again despite the fact that we know that the vaccine does not prevent a COVID infection. The CDC and the Biden administration, unfortunately, did not do much to help with this perception. But I have trouble understanding why anyone could see the sheer number of breakthrough cases and assume we no longer need to protect ourselves with masks.
During this pandemic I switched my major from human services to disability studies. I did this for a few reasons. One was the lifelong ableism I had experienced and a desire to understand where that came from more, a desire to understand more about the disability history, and a desire to help other disabled people. Another reason was I was sick of witnessing ableism both within my major from my classmates who spoke down about mentally ill people, as if none of their classmates reading their discussion board posts could be mentally ill and hurt by what they said. Yet another reason was being sick of experiencing academic ableism as a result of having chronic illnesses and at the time having a professor who was not accommodating in any way, and a disability services department that would not intervene about that. But in addition to those reasons, I also changed my major as a result of having witnessed the spike and ableism or I guess the spike in overt ableism that occurred as a result of the pandemic people would say don't worry about COVID it only affects chronically ill people and elderly. Disabled people knew that this was not remotely comforting to hear because that means it impacts us and that other people don't care if it impacts us.
Witnessing the world and our government and our neighbors abandon disabled people during the pandemic because they wanted to go back to normal, because normal life was more precious to them than the lives of vulnerable people, was difficult to say the least. People might assume the worst thing about being COVID-cautious is the boredom and isolation from staying home a lot. I could honestly probably enjoy my time spent at home a lot more if I knew that the world was not being so careless about COVID, which signals to me that they don't care about disabled people. What they don't realize is they are also risking their own lives. People have died during this pandemic because they took risks and didn't know that the consequence would be their life. They thought that they were healthy. They didn't think COVID was a big deal. I don't blame them entirely. The truth is the CDC and the Biden administration have done a lousy job at emphasizing to the public how dangerous COVID is. But everyone knows the coronavirus is dangerous to vulnerable people, such as immunocompromised people, and too many seem wiling to sacrifice the vulnerable for a chance at "normal life" again. Their behavior and mindset is rooted in ableism, selfishness, and arrogance. The ableist system you buy into because you think you're healthy can kill you as well. The capitalists do not value your life much more than they value the lives of the disabled and chronically ill.
When vulnerable people on Twitter told others that they should wear masks because it was the only way to keep immunocompromised people safe, the anti-maskers said just stay home if you're worried about getting COVID. The anti-maskers after the vaccines were not just republicans, but democrats and leftists as well. This rhetoric is absurd. As if disabled people don't still need to go to the grocery store or to doctor's appointments and as if disabled people don't want to be able to safely see their friends or go to events. As if many disabled people do not work jobs they need to survive. If, from the beginning, people masked consistently and took COVID seriously, I don't think it would have gone on this long.
It hurts being told that we’re too anxious about this. I’ve heard of immunocompromised people going to therapists and having to be told by their therapists that they are overreacting, that their fears of catching a virus are irrational. This is just another form of medical gaslighting that disabled people experience regularly. Being afraid of a virus that could kill you is not a sign that you’re overreacting. It’s a sign that you value your life. I’ve seen criticisms of immunocompromised people on Twitter, saying that we’re not living our lives, but we are, and we’re protecting them so we can continue to live them.
It is also infuriating how much able-bodied people talked about life-saving pandemic precautions impacting the mental health of people, without saying a word about how being forced to continue to isolate as the rest of the world goes "back to normal" has impacted the mental health of immunocompromised people. It doesn't help matters that most of these people talking about mental health and pandemic precautions usually never said anything about mental health before. These people have a very narrow idea of whose mental health concerns should matter: people without existing mental illnesses or health issues. Sure, we can talk about how some students going to school online may have experienced depression as a result. As a kid I had a couple months of homeschooling and could not physically attend classes a lot - I understand how isolation can impact students. But when that's the only aspect of mental health related to the pandemic that you want to talk about - not the grief, not depression in immunocompromised people, not the confusion and trauma students might be feeling as they are living through a pandemic, not people with mental illnesses having their symptoms worsen as they have trouble accessing care - it's quite clear you are using mental health to further your narrative that we took pandemic precautions too far, and trying to have a conversation about people who were mentally ill before the pandemic or people whose mental health worsened as a result of being immunocompromised during a pandemic would not be worth it with you.
If you've read all of this and you're still not convinced of the danger of coronavirus or the importance of masking and other precautions, at the very least, do not make immunocompromised people feel like we are being overly-cautious. Don't make anyone feel bad or awkward for still wearing a mask - I shouldn't have to say that, but I have heard many reports of this happening. Don't pressure anyone to loosen up about their coronavirus boundaries, the same way I hope you wouldn't about any kind of boundaries. Don't guilt immunocompromised people for not visiting you if you can't respect their reasonable requests for precautions. Don't tell us we need to "live our lives more" when we're simply being more cautious than we were pre-2020 in the face of an ongoing pandemic. I could probably go on and list a million things I have seen COVID minimizers do during this pandemic that they should stop doing.
But please, for the love of God, just try wearing a mask more. I promise it won't kill you. It will very likely save your life or someone else's.