10 Lessons I've Learned Living With Long Covid

It's been over four years since I got sick. I've grown so much from it.

I got Covid in March 2020, and was one of the first Long Covid patients trying to figure out what in the dang heck was going on with my body after my initial infection. Before Long Covid had support groups. Before it had a name. I’ve been through a lot of dark days, but I’ve learned so much about myself, about humans in general, and about what it means to really live. Here are ten of my top lessons.

I really am more than what I can do. 

I've always defined myself by my accomplishments and by what I can do for other people. So when I got Long Covid, my identity came crashing down around my ears. I couldn't do anything for anyone, including myself, for a very long time after I first got sick — and even now, four years later, my capacity to do is very limited.

I've had to spend the last four years rebuilding the way I think about myself. It turns out I was actually hiding behind my ability to go, go, go and be everything to everyone so I didn't have to look at a lot of fear and self-doubt and insecurity and old wounds. When I didn't have my job and my large social network to mask all my pain, I was finally forced to really look at it and address it, and it was one of the best things to ever happen to me.

It turns out I actually really love myself, just myself, my own brain and my own heart, without any of the trophies or self-propaganda. I'm a pretty good human, and I'm working every day to be a better human. I can finally sit still in my own company these days. It's one of my favorite things to do. 

My spirit is more resilient than I could ever have imagined. 

Before Covid, cycling had always been my favorite hobby. People always say it's very weird how I'm not afraid of falling off my bike, but it's because I've been falling off a bike my entire life and it's never killed me. I love to ride a bike but I'm actually not great at it. Mountain biking was always my favorite, but I was also the worst mountain biker in my group of friends. I was constantly crashing into trees, toppling over roots, careening off the edges of slopes, tipping over into creeks — but I kept on doing it. Bleeding and bruising and even broken bones aren't forever. It didn’t bother me to wreck because wrecking wasn’t the end of anything, except maybe a tire tube.

Before I got Long Covid, my biggest fear was becoming disabled. I didn't think I would be able to emotionally or spiritually handle it — probably because my entire identity, like I said, was wrapped up in doing, doing, doing. But it turns out, for me, getting disabled is kind of like biking. Yeah, I fall down a lot more now, literally and metaphorically. Yeah, I'm battered and beaten down a lot more too. But it hasn't destroyed me. I’ve adapted, and grown, and changed, and the fact that it hasn't kept me down has only added to my belief in my own resilience.

I used to naively think I could do anything. Now that I actually know my limitations, and understand that having limitations isn't a failure or a weakness, and also know that I'm gonna keep getting back up no matter what knocks me down, I feel stronger than I ever have before. 

Doctors don't know everything. 

The first two doctors who refused to treat me for Long Covid have now been forced to leave their careers because they have Long Covid. The first told me Long Covid couldn't possibly exist, only a few months after I was infected in the initial wave in New York City in March 2020. She told me to stop calling her and to go see a psychiatrist. The second refused to treat me at the first Long Covid clinic at one of the most prestigious hospitals in NYC. The FDA had just authorized an antibody test for Covid, and I wasn't testing positive, so she insisted, repeatedly, that there was no way I'd even had Covid. We now know that 36% of people who got Covid in that first wave didn't develop antibodies. 

Most doctors will not admit that they don't know everything. 

The thing those two doctors had in common is how adamantly they insisted to me, over and over and over, that they 100% completely and totally for sure no question knew what they were saying was correct. Covid was literally a novel virus that shut down the world, a global pandemic for the first time in any of our lives, but they were thoroughly convinced — six months after its discovery — that they knew all they needed to know to tell me with complete certainty that what was wrong with me had nothing to do with Covid. Angrily, even, when I continued to push for answers. 

Since then, I've been to more doctors than I can count or even remember, and more of them than not have been uninformed and misinformed about Covid and Long Covid. When I was getting the colonoscopy I needed to diagnosis pernicious anemia, the anesthesiologist told me, as he was administering anesthesia, that Long Covid wasn't real and the whole thing was in my head. 

Before Covid, I kind of bought into the idea that doctors are gods. Now I know how very, very wrong and dangerous that idea really is. 

Don't be a "hero," just take the medicine.

I cannot believe there was ever a time in my life that I tried to "power through" pain and other weird crap my body was doing. I cannot believe I ever bought into the idea that needing medication was somehow a "weakness."

I developed pernicious anemia from Covid. My body literally cannot absorb B12 from food or oral supplements. I have to inject it directly into my muscles. I also developed a type of Dysautonomia that has my nervous system running at 100 at all times always, so if I don't take both a beta blocker and an SNRI, I will be in a state of constant adrenaline surges and panic attacks. I have endometriosis patches everywhere inside my body except my heart and lungs, so if I don't take birth control to keep it suppressed, basically every organ I own will have its own period once a month.

I would be incapable of even getting out of bed or functioning in any way without a whole trough full of medications. So I take them. And I don't care if people — including doctors — think that makes me weak or soft or lazy or whatever other thing. My body doesn't work like a normal body. Medicine exists to make it function more normally. I take it. That's that. 

Lots of people will simply never believe me. 

A couple of months ago, someone I love sent me a message that said, "I really miss you, but I know you're still a little bit scared of being around people." 

It made me want to give my phone to the sea. I didn't even have the energy to respond with more than a smiley face. Because I'm not "a little bit scared of being around people." For starters, it is incredibly dangerous for me to be around people who are not taking Covid precautions seriously, including consistently masking in public, testing beforehand, and agreeing to hang out with me in a place that's well-ventilated, preferably outdoors. And the list of folks in my life willing to do that is like five people long and does not include the person who texted me. 

I'm immunocompromised; the first time I got Covid, it wrecked my entire life; and it has taken me four years to get back to a baseline that's about 40% of my pre-Covid capacity. Who knows what would happen to me if I got Covid again. I only know that every Covid doctor I've seen has told me it would be very, very bad. And the research backs that up. 

Secondly, I have Long Covid! I struggle enormously with auditory processing and verbal communication. It takes 50 times more energy than it did before I got sick for me to carry on a conversation, and there is always cognitive and physical fallout from it. If I hang out with someone for even an hour, I’m going to be in bed most of the next day, unable to really talk, probably with a migraine, definitely with muscle soreness and a sore throat, and the kind of fatigue that makes it hard to even walk up one flight of stairs. It's a choice I sometimes make to spend a little bit of time with people I love, but there are major consequences for doing it.

I've explained this to everyone I know more times than I can count, but when I reiterate it after someone tries to make me feel guilty, they always seem shocked. Oh, wow, I didn't think about how that situation could be dangerous to your health. Oh wow, I didn't realize that was still going on. Or, more often, they'll say something that lets me know they think I'm either outright lying or just being dramatic. This has been going on four years now, so I have to conclude that most people in my life are simply never going to actually believe what I’ve told them.

Disappointing people gets easier the more you do it. 

I used to live my entire life consumed with the fear of disappointing everyone. I would lay awake at night agonizing over every decision, replaying every interaction, never saying "no" to anyone. What if they get mad at me? What if it upsets them? What if they don't like me anymore? What if they think this means I don't care about them? What if they find out I'm not perfect? What if this makes them think my presence in their life isn't beneficial anymore? What if this makes them miserable and it's all my fault?

When I got Long Covid, the choice actually got pretty simple for me: I could either disappoint people or I could destroy my life. Really, it was as black and white as that. So I started disappointing people. All the time. I said "no" more in the first six months of having Long Covid than I had in the rest of my life combined. I stopped doing things that would hurt me even if I knew it would upset other people, even if I knew they'd probably never understand. 

And you know what? Disappointing people actually gets a whole lot easier the more you do it. You learn really fast that many of the expectations other people put on you are unfair. You learn really fast how many people want what they want way more than they want you to be okay. You learn really fast which people in your life are capable of grace and healthy communication. You learn really fast who actually believes you. You learn really fast who values you beyond what you can do for them. And best of all, you learn that disappointing people won't kill you. In fact, it just might save you. 

Jabby-jabbers aren't worth the energy. 

I never realized how many people are out there constantly taking jabs at each other until I got sick. I've had to become hyper-aware of the things that drain my energy. Ruminating on swipes people take at me consumes a shocking amount of brain- and heart-power, so I had to work backwards from feeling crappy after interacting with certain people, to realizing it's because they can't even casually text without making a jab at me, to limiting my contact with them.

You know the ones: passive-aggressive comments that mask anger and resentment, bringing up things from your past you're not proud of, little barbs that let you know they don't actually believe you about your own body's needs and limitations, backhanded compliments, sulking and trying to force you to guess why. I almost didn't even register that stuff was happening before I had to start conserving my energy, and my life is so much less stressful now that I keep those people at arm's length. 

Real friends are worth everything. 

This week I got to go to my first real event since 2020: a feminist tarot history Q&A at my local bookshop. And I got to go because my dear friend Meg Jones Wall conceived it, pitched it, moderated it, and spent so much time and energy and badassery making sure it would be masked (with free masks available and handed out to everyone), that it would be inside-outside with proper ventilation, that there'd be a CO2 monitor working full time (they said we'd move everyone outside if the monitor said we should), and accessible seating.

I just got to be with my friends that night like a regular person. To touch them and hug them and laugh in real time at their jokes. I got to ask a question to Cat Willett, who wrote Women of Tarot: An Illustrated History of Divinators, Card Readers, and Mystics, and see her eyes crinkle with delight when she answered part of it. Do you know how long it's been since I got to see the look on someone's face when I asked them a question they were thrilled to answer? And now I know something about her book I never would have known if I couldn't have been there, something that will make reading it even more special! 

It was about ten thousand degrees the day of the event, and my heat intolerance was rearing its ugly head, so I had to use my cane. I'm always so nervous when I'm out with my cane. But as I stood at the crosswalk in front of the bookstore, some of my friends came up behind me and started yelling, "Hey, who's that butch swaggering around Queens with a cane and an orange backpack?" And, "Hey, I know that butch with that sexy cane!" It was like they'd cast a magic spell on me, completely dispelling any insecurity and fear I was feeling, even though they'd never even seen me with my cane before. I've been riding an emotional high all week that's not going anywhere any time soon. 

Asking for what you need is better than suffering. 

I've been thinking a lot lately about Felicity Nelson's essay in The Sick Times about how she and her partner both have Long Covid. I've been thinking about this line specifically: "It slowly dawned on me that we needed to educate our families on how they could make their love accessible for someone who, even on his best days, could not socialize for more than a few minutes. When you have lost the ability to generate hope for yourself, family support provides that hope for you. Even if you don’t recover, they still love you and they are doing okay. And that’s hopeful." 

Before I got Long Covid, I would have never asked anyone for anything. I would have folded myself into any shape, no matter how painful, no matter the consequences, to make anyone else's life just a little bit easier. After I got Long Covid, my choice was to suffer or to be brave and tell folks how I needed to be loved. The people who have made their love accessible to me, and have accepted the limited ways I'm able to love them back, have literally changed my life. They have given me hope when I had none. They have banished my biggest fears. They have shown me I belong in their worlds — in the world — just as much as I did before I got sick.