Left Behind
Left behind. It’s not just a feeling of being left behind – it’s reality. And it’s suffocating. So, I have to get some thoughts out. No matter how messy or disorganized, I can’t hold this stuff in. So I’m using this space as part catharsis, part educational, and with less energy spent on making my words organized and perfectly grammarized, as much as I love perfecting those things.
I’ve been watching. Watching the world try to move on and pretend the pandemic isn’t still happening and that a virus isn’t still killing and disabling people, including children. Watching the impact of government and public health officials providing incomplete and even inaccurate information. The impact is this: people don’t seem to understand or believe that it’s airborne. People don’t seem to understand or believe that Long COVID can happen to anyone, of any age, of any prior health status. They don’t seem to understand or believe that every reinfection increases their risk. They don’t know that vaccines, alone, are not the way out. And all of those truths are exhausting and disheartening, so I understand wanting to give up, give in, try to move on. I do. But please don’t let that apathy sink in. Please question what you think you know.
It’s been painful to watch the world pretend and try to move on, but it’s getting harder. Because, now, it isn’t just acquaintances and strangers who’ve stopped masking in public, indoor spaces, and who have started to resume traveling the world and participating in every pre-pandemic activity. Now, it’s my friends and family, too. I’m assuming it’s a combination of 1) the pressure to conform and fit in; 2) fatigue, grief, and our world not allowing space to process the immensity of living in this time; 3) being uninformed; 4) easily finding “professionals” (including physicians) to confirm bias or dis/mis-information. But I’m only assuming. Because despite me living this experience of Long COVID, now being an advocate, and being more informed on this stuff than most physicians, let alone anyone in most people’s social circles, no one is interested in what I know. Is this a case of not wanting to know the truth? Of thinking that if you ignore reality, you won’t have to deal with it? Because if we tell the truth, and then we all continue with no longer masking, not getting vaccinated, living as though we aren’t still in an ongoing pandemic – what does that make us? I’m not going to label it as anything, I’m just assuming it might be an underlying motivation for listening to whomever confirms our bias, instead of those who are screaming the truth into the void. If a doctor says babies and kids can’t get COVID or Long COVID, or that a vaccine will protect from any long term or permanent health effects, or that being healthy and active means everything will be fine… then perhaps it’s easier to listen to that and go on with living out the lives we imagined for ourselves and our families. This is what happens when systemic problems get placed onto the shoulders of individuals. It’s not our fault, as individuals, that we are being put in these scenarios of deciding what constitutes risk and deciding where the truth lies. It shouldn’t be on us as individuals to keep ourselves and loved ones safe when this is a global problem that connects us all. While many of us are doing the best we can to keep putting one foot in front of the other, allow me to share 10 myth-busting facts that are solidly rooted in research and expertise, in the hopes helping you be more informed and safe:
1. Vaccines don’t protect from Long COVID. Research shows only about a 15% protective factor, which is not enough to claim protection from long term impact. Vaccines protect from death and severity of symptoms during the acute phase, though, so it’s still important to get vaccinated. But Long COVID occurs regardless of the severity of the acute phase of illness, and, unfortunately, regardless of vaccine status.
2. Anyone of any age can develop Long COVID. Adults, children, babies; fit, sedentary, healthy, pre-existing conditions. Your pre-existing health status does not protect you from it. The young, previously active people who make up a large portion of the Long COVID community can easily attest to this (myself included), but previously ill, disabled, immunocompromised friends, family, and community members also deserve our mitigation efforts since they get Long COVID, too.
3. Children and infants do get infected with and spread COVID. Officials saying otherwise is nothing short of disinformation.
4. COVID is airborne and can remain in the air for an extended time (hours), so keep wearing high quality masks in public spaces. There’s lots of literature on this. And even my own story can support that it’s airborne: I wore all the appropriate PPE for contact & droplet precautions with my COVID-positive patient; I donned and doffed the PPE carefully and correctly. I still got infected from being in the room with them for 10 minutes. If only our world leaders could take measures to clean our air in indoor spaces – it wouldn’t be that hard! It could make us all a lot safer.
5. Masking is protective. Masking protects vulnerable people. Masking protects children, seniors, abled and disabled. Masking protects everyone. It works best when everyone is doing it, but even one-way masking is better than nothing.
6. N95, FFP2, KN95, etc. protection is far far better than surgical/cloth masks. Especially when others aren’t masking. Remember, it’s an airborne virus.
7. Getting infected with COVID does not prevent reinfection. Antibodies wane within days. And impact of reinfection is cumulative. Every infection increases the risk of Long COVID.
8. COVID deaths and hospitalizations are not fewer. They are as high as ever. It’s difficult to have an accurate measure because testing is no longer widely available, but numbers are publicly available if you look for them. Leaders and media just aren’t talking about it like they were.
9. Isolating, limiting contacts, missing out on life things can be hard on mental health. Preventable death and disability from illness are harder on mental health. I can personally attest to this, as can millions of others worldwide. We are increasingly becoming a majority-disabled society. There are millions of people dying worldwide from preventable illness.
10. People typically remain COVID-positive and contagious beyond 5 days of COVID infection. The rule to return to work after 5 days is ridiculous and dangerous. It’s rooted in nothing but capitalism. Ironically, an increasingly disabled society will not support our capitalist-driven societies and economies, though.
If you look this stuff up, you can easily find it to be true. It’s not just my opinion – these things are supported by data, research, and evidence from collective lived experience, too. Our leaders aren’t talking about it anymore, or never did talk about some of these hard truths, though. Oddly, allowing our world to become more and more disabled because of mass spread isn’t going to just magically solve itself, though. I will never understand why putting a piece of material over your face is so polarizing when it literally saves lives.
I can explain and talk about this stuff with ease because I live this reality more intimately than those who are not immunocompromised, and because I have had a vested interest in understanding all of these elements about COVID. I cannot be a responsible advocate without this knowledge, and as a healthcare professional who is now living with the impact of unmitigated spread, I am constantly curious to learn more. I wish people in my life would value this knowledge and experience. Instead, I have people send me resources or articles from time to time. Which I understand as them being thoughtful or trying to help – and I’m especially grateful they aren’t about juice cleanses or yoga “curing” people (eyeroll) – but every single time it’s not new information to me. I’m usually already aware of what they send me. I don’t think people understand just how much I am plugged into the global community. Just how much I am aware. Just how much I (often) know the latest research and articles. Why don’t people ask me questions or for information, instead? Something disabled and research communities do for each other is provide summaries so that it’s easier to read or understand new information. People are frequently sharing the latest sources of info and research. We are all working desperately to improve our symptoms, find treatments, avoid worsened illness (ie. reinfection), and recover. This info-sharing is a common practice and it’s definitely true with Long COVID and ME/CFS communities. But it’s almost as though people in my life think that since I’m now ill and disabled, I no longer have valuable knowledge and skills. I think it’s one of those sneaky, subconscious ways that ableism exists within us. You don’t even realize it, but you don’t value me like you used to. Then again, I’ve often been underestimated and mislabeled in my life even pre-illness. People have always assumed incorrectly about me. (We really suck at asking questions and checking our assumptions, don’t we?) Even my experience of working through the pandemic before I became sick is proof of that.
For me, working in healthcare during a pandemic meant I was serious about COVID precautions and any identified symptoms because I wanted to keep people safe. Some days, that became very frustrating – “Really?! Am I feeling sick, again?!” Half the time it was likely the impact of stress on my body. In the past, I just ignored how work stress and environments made my body feel frequently ill (not a recommended practice, but was how I coped with a job I loved but that my body did not!) When the pandemic hit, I suddenly had to pay attention to any potential signs of illness in myself. I took that responsibility seriously and what did it get me? I had coworkers label me as “anxious” without ever asking questions or checking their assumptions. I’m not exaggerating. A well-respected, experienced colleague emailed me – seemingly on behalf of the team – making it clear that they had talked about me and decided I was struggling with anxiety. They weren’t even correct about what they thought they understood about me. And they weren’t even a coworker who knew me well in the slightest. The audacity! Besides, even if I was struggling with anxiety, what a way to stigmatize! I’ll be honest that I sometimes wonder if my past colleagues have decided I’m “anxious” or “depressed” or not trying hard enough to recover from this ridiculously debilitating illness. In reality, they probably don’t think about me at all. I can imagine it would be hard to remember what happened to me and acknowledge it could happen to them, too. Plus, our “work friends” or “work family” aren’t actually that for most people. It’s kind of a facade, is it not? Whatever the reason, I never heard from anyone once I was no longer acutely ill with COVID. This is another common experience among the disabled community (including pre-pandemic): once you become sick and/or disabled, you learn who your real friends and family are. Ironically, my actions when I had COVID symptoms onset on that January 2021 workday, was in their best interest. I protected my coworkers. I left work almost immediately after realizing my throat was sore and I was feverish. No one else I worked with or saw that day became sick because I took it seriously and acted promptly. I was labeled with “anxiety”, but wasn’t recognized for my diligence in keeping people safe. Even after becoming ill with Long COVID, I had a coworker text me and say, “Maybe it’s good for people to get COVID over with so that they stop worrying about it.” What a ridiculously unkind and thoughtless thing to say to me (plus the way that thinking is rooted in eugenics…). The level of misinformation in that statement is wild, too. (Please refer back to my list of myth-busting facts!) These things aren’t overly surprising, though. Healthcare is very ableist and stigmatizing. We’ve been trained that way and our systems are set up that way, too. Regardless of the many inaccurate (and sometimes demeaning) labels that were applied to me, I am so glad I could keep others safe. I’m not actually looking for recognition for that. I just wish people would or could recognize when their ableism is at play. I miss my work in the hospital and as a neuro physio. I don’t miss being misunderstood and mislabeled by ignorant coworkers who think they know me, though.
Back to my main point: everyone seems to be moving on. Everyone except me and my spouse – I’m so lucky that he gets it; that we’re in this together; that he still masks and takes COVID precautions seriously. I don’t know what is going to happen to me when I get reinfected. (It feels like when, rather than if, at this point.) Most people with Long COVID who become reinfected experience worsened illness and disability. I can’t understand why most people not longer take this reality seriously. I’m not “irrationally” afraid – my body is now immunocompromised and COVID spread is as high as ever. To live fearlessly, without regard for COVID realities, would be to shorten my life and the lives of others. Do you realize you’re asking me to risk my life and health when you stop masking? Do you truly think I (and others like me) should just stay home forever so you don’t have to put material on your face? Look, I’ve had times, before I knew or understood as well as I do now, when I made risky decisions. I get that it’s hard, confusing, and there’s a lot of social pressure to “move on”. But at the same time, I don’t get it when you personally know me. So I guess I just wish that people could make the courageous choice to wear a mask in the store, at the office, anywhere indoors, even if it means being the odd one out. Do it for me. Do it for yourself. Do it for all the kids who aren’t yet protected with vaccines. Do it for everyone who cannot be vaccinated. Do it for those who are anti-vax and believe COVID is a hoax.
Take care of yourselves and others. Stay safe out there. And if ever you need resources, information, or advice – I’m here.