Why I'm grateful to my Long Covid

Hear me out

Photo by Jon Ander on Unsplash

Okay, I’m sorry for the clickbait-y title. I’m going to level with you. I absolutely abhor Covid and the Long Covid it has given me. I hate that 400 million people are suffering from Long Covid around the world. I hate that almost a quarter of Americans have some form of Long Covid, and that number is steadily rising every day (in fact, Mike Hoerger, director of the PMC, estimates that there was a 1 in 3 chance of an exposure in a gathering of 20 on NYE 2024 and 6.7 million new infections per week as of Dec 30, 2024, both of which could result in an estimated 300,000+ new cases of Long Covid). I hate that Long Covid has upended my life. I hate that it has ended relationships and strained friendships. I hate wearing a mask everywhere. I hate that I have to think about this disease EVERY. SINGLE. DAY.

However, over two years in, I’m also starting to see other things it has brought to my life. Now don’t get me wrong, I would never choose a life with Long Covid and I’m still resentful that I have it. I am also absolutely not trying to minimize how horrible and disabling and fatal Covid/Long Covid can be. I am lucky in that I have serious LC but not so severe that I am bed-bound full time, or worse, dead. I am also absolutely not trying to spew toxic positivity, because that helps no one. No - what I’m trying to say is that Long Covid completely changed me physically and mentally for the worse, yes, but in some ways actually, I’d like to think I’m a far better human being than I was before because of it. Most of life with Long Covid is absolutely and utterly terrible, and personally, I’m just trying to find some silver linings to latch onto, because otherwise, well…I don’t want to think about it.

I will preface this piece by saying that I am obviously nowhere near close to a perfect human. I make so many mistakes, hurt people, will probably hurt more people in the future, and am no paragon of virtue or kindness. I also have an incredible amount of privilege along socioeconomic and racial lines, which allows me to live through Covid and Long Covid quite differently than a lot of people. But slowly, I see how suffering from Long Covid has opened my eyes to a whole new way of looking at the world that I was completely not attuned to before. I wish Long Covid wasn’t the path that brought me here, but because it is, I will acknowledge it.

Disability justice

As I’ve mentioned in many previous posts, I was pretty uninterested in disability justice and disability politics before getting disabled myself. I think this is probably the case for most people. It’s not that I didn’t care (though…I guess I didn’t if I’m writing about it this way), it’s more that I felt it didn’t affect my life, so why should I prioritize it? I read books like “Disability Visibility” and followed a few disabled content creators online, but didn’t really have that many disabled friends or a true understanding of what disability justice actually is and why it matters for everyone. If you would have asked me before, I would have of course affirmed that I support things like the ADA and equal rights for all disabled folks (including when it comes to pay and minimum wage), but I took zero tangible actions to support the disabled community and was absolutely not in solidarity with this vast, diverse, and multidimensional community.

Because my literal existence is now on the line, I (sadly) care now. Looking back, I now realize that I should have cared before - not just for myself, but for everyone else too. People can become disabled at any single point in their lives. It may be temporary or it may be permanent. We live like it will never happen to us but we are so wrong in doing so. I now look at my entire life through an accessibility lens (and am still trying to unlearn all my ableism daily). I think about masking constantly and how through that action we are not only protecting ourselves but those around us (especially immunocompromised and disabled folks who cannot mask because of their disability or because of financial accessibility, but are still vulnerable and are counting on others to keep them safe). I think about how masking is both an act of solidarity and love. I think about vaccines and how we can help keep people safer with them. I think about so many things I never thought about before.

My transition into disability has made me more jaded and cynical for sure, but has also lit a teeny tiny fire in me to start fighting back (vocally) and speaking up for myself and others. I now try to always demand ADA-compliant accommodations, I ask people to mask and take other precautions. I look at others knowing they might have an invisible disability that I cannot see.

When it comes to the 10 principles of disability justice so beautifully enumerated by the Sins Invalid collective, I try to incorporate intersectional thinking into my worldview in every scenario because I only now truly see how everything is connected and that collective liberation is the objective. Disability, climate change, Palestine/Sudan/Congo, white supremacy and capitalism, and beyond. I see the importance and utility of cross-movement organizing (e.g., queer anti-Zionists who mask). I am starting to see the importance of my worth outside of productivity. I think about pacing because this is going to be a long fight for all of us, we need to be sustainable, and not everyone always has the spoons.

I still have a lot of work to do though. I need to do a better job about listening to, centering, and uplifting voices that are most impacted (including but not limited to BIPOC and trans voices). I still need to unlearn my ableism. I still need to unlearn internalized homophobia (despite my queerness). I still need to unlearn my racism as a white person who has benefited tremendously throughout their life from the systems of white supremacy. I still need to do a better job committing to cross-disability solidarity. But now my eyes are open, and I can’t unsee.

Community

I still don’t really feel like I ‘belong’ in the disability community, but I’ve also been scared to dive in deeper. Partly because I think, maybe I don’t have it “that bad,” or maybe because I don’t know where to start, or perhaps because I’m still in denial that I am in this “club.” Regardless, another thing LC has taught me in the importance of community so I guess I need to try.

While, sadly, I don’t feel like my pre-existing community (both friends and family) has shown up for me in any meaningful way these last two years (save a very select few individuals), I can see exactly how critical community and community care is in sustaining the lives of people like me. Not just because we may need help with admin, or chores, or other life tasks, but because these links literally keep us alive and sustain us. That people are - through their actions - showing love to us. It’s important not to confuse this with pity, charity, or as a transactional relationship (more on that later), but as I learn more about mutual aid, I’m in awe of the communities and networks disabled people have already built to sustain each other within a system that promotes and cheers on their demise.

I still haven’t found my community (especially given my limited energy and attempt to find intersectional spaces that integrate things like Covid Consciousness, queerness, and disability), though I’m trying to explore more and am meeting some very interesting people along the way (including here on Substack. Hi!). The point here is, without Long Covid, I don’t think I ever would have seen just how important community is to survival - not just for disabled folks, but for able-bodied people too. We think we can do it all ourselves, and the United States certainly preaches that message that you are your own person and need to take care of yourself, but this is a myth. We had a brief awakening to this desperate search for community in 2000, with the publishing of Robert Putnam’s “Bowling Alone,” but too quickly forgot and were quickly re-consumed by the appeals of consumerism and capitalism. But I think deep down we all know that no one succeeds or thrives in isolation. We all need community.

Empathy

I really thought I was an empathetic person before my life changed. I truly did. What I now see is that my capacity for empathy has increased multi-fold due to perhaps a dearth of empathy experienced now that I’m on “the other side,” but that also, I had a huge empathy problem before in that it was very selective. I think neurodivergence (and awareness of said neurodivergence) also probably has to do with this increased capacity (or awareness of my capacity for empathy toward others). In Dr. Gabor Mate’s book, Scattered Minds (parts of which I agree with), he talks about how neurodivergence can make people take empathy to a different level - actually to the point of identifying with and internalizing the suffering of others.

I’m definitely not trying to claim that I’m some higher level empath today, but the fact that I receive so little of it now given my disabilities and general struggles living this life makes me realize how ‘stingy’ I might have been with my empathy beforehand, which breaks my heart. Because I couldn’t see all suffering right in front of me, it was easy to ignore it or pretend it didn’t exist. I absolutely do not want transactional empathy, and will not give it because I expect it in return, but I now want to give it precisely because so few people give it to others.

Receiving empathy (and not pity, compassion, or sympathy) from others is truly soul-replenishing the times I have received it. Though someone may not have lived my exact circumstances, to me they are sharing the gift of empathy when they listen thoughtfully to what I have to say, make me feel seen, don’t try to problem solve (unless I ask them to), and demonstrate that they have the capacity to imagine themselves in my shoes. It is so rare to receive this gift, and so now I’d like to share it more often with others and make them feel as good as I feel when I receive it, because we all deserve that. It was my Long Covid that showed how much I needed empathy and how much I have the capacity to give.

Patience

I’m sure my Long Covid has taught me tons of other stuff that I have yet to figure out and will one day recognize, but the last thing I want to touch on is the abundance of patience it has taught me - both toward others and myself. The patience toward others goes hand in hand with empathy I think. Recognizing that people around me have struggles I may not be able to see. Recognizing that if I require or demand patience now due to my brain fog, cognition issues, comprehension issues, etc., I need to give that exact same patience to others.

But most interestingly - as this is still very much a work in progress - I am learning (slowly) to have more patience with myself. I’m learning that I am no longer able to be the Type A, overachiever, constantly on the move, ambitious human I once was. I am learning that my expectations of my energy levels and the reality of those energy levels are very different (i.e., I think I have 100 spoons still like my pre-LC days, but actually I probably have closer to 10). I am learning that despite capitalism beating it into us that our self worth is measured by our productivity and value to society, I am intrinsically valuable and wonderful, and that accomplishing things I hope to accomplish will take longer than expected but that doesn’t mean I’m a failure. I am learning that I can maybe only do 2 items on my to-do list instead of 10 in a day. I am learning that my mind may be ready to go, but my body isn’t on the same page, or vice versa.

All in all, I’m still annoyed, frustrated, angry, grieving, and irritated most of the time when my brain fog hinders me, my physical exhaustion forces me to go horizontal, or some other random symptom bubbles up to incapacitate me (three-week-long migraine, anyone?), but I also am starting to understand that I am not really in control, and I might as well learn to be patient with myself, my mind, and my body, as its going through both a physically, emotionally, and mentally traumatic experience of both living with this neuroimmunovascular degeneration amidst a society that denies and ignores its existence.

Closing thoughts

If you’re suffering from Long Covid, I absolutely won’t tell you to try to find the bright side like I’m trying to do. It is an awful illness that no one should be condemned to live through. I understand how angry and distraught and depressed and tired you probably must feel. Living with Long Covid is a lonely place.

Even if one day I am somehow miraculously cured or recovered from Long Covid, I think I’ll still probably harbor a lot of rage and grief for a long while about the years it stole from me and the physical and mental capacities and capabilities it erased because of the brain and organ damage. Nevertheless, I am grateful that this life-altering development gave me one good thing: opening my eyes. To the oppression that surrounds us everywhere. To the silent struggles and invisible disabilities. To the injustices that persist. To the suffering we all carry.

There’s no way to know for sure, but I truly don’t think I would have had this awakening or come into this level of consciousness without this experience of Long Covid. I’m sad it came at such a high price, but I am grateful it’s here now to stay.

Note: All my essays are 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.