Here’s What It’s Actually Like Living With Long COVID

Photo: Getty Images/10'000 hours
I attended a friend’s wedding last year knowing that, in a middle of a pandemic, any social situation would come with a certain level of risk. But I didn’t expect that I’d be one of the folks still dealing with COVID-19 almost a year later.

When I first caught it, I was frustrated that my COVID seemed to be different than friends' even though they'd gotten it at the exact time I did. Most of them had no symptoms. My fever lasted the full two weeks and beyond. I can’t recall ever being that sick in my life (except the brutal 24 hours after I was vaccinated). I’ve never even had the flu. Luckily I didn’t require hospitalization, so I figured that, like most people, once I finally tested negative, it was over.

Nearly a year later there are good days, bad days, and really bad days. I’m one of the 19 percent of adults who struggle with long COVID months after contracting the virus. Now that I’m familiar with the symptoms, I can gauge what I’m dealing with as soon as I wake up. On really bad days, before I open my eyes, I’m dizzy and, this part is weird to describe, but I can actually feel the energy my body is using just to breath and function.

I’ll be honest: I’ve never been a particularly athletic person. But in my previous life, I took workout classes and loved LA hike-walks with my girlfriends. Now I can barely make it around my block without gasping for air. It’s a short block. I often work laying down because I can work a little longer and with a little less brain fog if I’m not using the energy it takes to sit up at my desk.

My mother loves to tell the story about the time I went to cheerleading camp in middle school and was so exhausted that I fell asleep with a cheeseburger in my hand practically mid-bite. It’s a funny family legend, but now it’s a mental barometer for my state of fatigue. Am I too tired to eat? Take a walk? Meet my friend for dinner? Drive a car? And maybe I’m not exhausted in this moment, but if I do take that walk or meet my friend, am I sacrificing my workday tomorrow?

It’s energy Tetris and mostly I lose. If I do this thing, I can’t do that thing. If I attend that event on Saturday evening, I’ll need a nap before and to clear the next day’s schedule entirely. If I go to the baby shower and the friend dinner in the same day, forget about being upright tomorrow. And God forbid if those events don’t have a place for me to sit down. Nowadays, my work rarely requires me to be on my feet for any length of time, but when it does, I’m prepared for two to three days down with a fever afterward.

A fever is good news though! I’m grateful when I have a fever. The fatigue, the brain fog, post-exertion malaise, shortness of breath—those symptoms all feel so subjective. In the unkind story I tell myself, they are all in my head, and I’m simply lazy, dumb, and old. But a fever is tangible, believable, and shareable! That’s a symptom I can feel confident about.

I don’t expect the people around me to have fully digested what’s happening to me. I’ve always struggled to ask for help even when a task is wildly out of sync with what’s reasonable—evidenced by the black eye I gave myself when I tried to mount my television alone several months pre-COVID (I did it though!). For years, “showing up” was a part of my personality and it’s painful that I can’t be that person anymore. I’m ashamed that I’m too tired to attend baby showers or birthday parties. When I can show up, I certainly don’t want everyone to know what a challenge it was to prepare or the consequences I’ll experience after. It’s not their problem. I’m there, and to them I seem fine, and those experiences are not about me.

If this ever ends, there are lessons I’ll carry with me. Ironically, my productivity has gone up in the face of my symptoms. I don’t have the luxury of procrastinating since I can’t depend on my body and mind to be able to work tomorrow. I take advantage of the energy I have when I have it, which allows me to be gentle with myself on days that I might not be able to accomplish everything I’d like to, not to mention the days that I can’t accomplish anything at all. I can’t waste energy on false urgency. And boundaries are easier to stick to.

I’ve spent my whole career believing that if I didn’t answer an email as soon as I received it, I was failing. It turns out that very rarely is anything legitimately urgent. Panic and anxiety can literally suck the life out of me, so I’m forced to find the quick route to solution and serenity when I’m confronted with disruption.

It's taken time and support to hone this approach. I was first diagnosed with depression at 17 years old, so I’m no stranger to the dark place. But two to three months post-COVID, I hit a new low—a therapy-twice-a-week, stay-away-from-edges-and-ledges kind of low. Prior to my COVID positive, I’d just experienced a transformational couple of years, and for the first time in my adult life I was waking up with energy and purpose. COVID stripped that from me in a way that felt so unfair.

For the most part I’ve kept my long COVID to myself because other people suffer from “real” illnesses, so who am I to complain about being tired and foggy? I’m also afraid that if someone hasn’t had this experience, they might not believe me.

But the truth is, I don’t need everyone else to believe this is real and awful. I need to believe it. I am, in fact, not lazy, dumb, and old. I’m sick. Sure, I’m not at death’s door, but the Kristin who existed a year ago doesn’t anymore and as I trudge through the cycle of grief around that, I’m slowly coming to terms with who I am right now.

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