Kaitlin Denis, on approaching Year 2 of living with COVID-19.
I caught this virus before anyone had even died in Illinois. That was like a century ago, right? Now we’re talking about Year 2, vaccines, new variants, a new administration, but for me it’s still exactly the same. I’m always in this bed. I’m always in this room. I’ve been sick for the last 330 days. I force myself to keep track because otherwise time doesn’t move. I feel like I’m in jail and putting tally marks on the wall.
I used to go to sleep thinking: Tomorrow. Tomorrow I’ll start to feel better. I don’t really do that as much anymore. I’m trying to come to terms with the fact that this virus isn’t something I’m about to get over. This might be it. Maybe this is who I am.
I wake up every morning, and I brace myself. What’s it going to be today? I’m what they call a “long-hauler,” where COVID-19 takes over your body and won’t go away. Doctors think there might be tens of thousands of us, but nobody really knows. It’s a medical mystery. It’s like a random grab bag of symptoms. You reach in, and you never know what you’re going to get. How about some nausea and severe dizziness? Or would you prefer a migraine with a side of joint pain? Some issues are constant, like body aches and head-to-toe fatigue, but the weirder ones seem to randomly come and go: ringing ears, sore ribs, heart palpitations, ear popping, numbness in my fingers, excessive mouth watering, lightheadedness, brain fog. My memory loss is so bad sometimes that it’s like I have amnesia. The other day, I woke up and wanted to put on running clothes. In my head, I thought I was going for a jog and then heading in to work, but as soon as I stood up, my heart rate started spiking, and it was like: Oh yeah. I can’t even walk around the block by myself. I don’t have a job anymore. I’m on disability. What am I thinking?
A lot of times I hardly get out of bed. The day never starts or the night never ends. It’s a black hole. I wait for the hours to pass.
I’ve withdrawn from pretty much everyone. I get the feeling sometimes that people think I’m being dramatic. I can’t really explain what’s happening to me, and neither can doctors. Some of them want to put me on antidepressants or send me to counseling because medically, none of this makes sense. I’m barely 30. I just got married. Ten years ago, I was playing Division I college soccer, and now I can’t go to the grocery store unless I ride around in one of those scooters. It’s like: Really? Really? It seems pathetic to people. It seems pathetic to me.
COVID-19 was barely on my radar when I first got sick in early March. Nobody wore masks. Chicago hadn’t locked down yet. I got a headache and a sore throat, but I tried to gut through it. I work in finance, and it’s that Wall Street culture of hand-to-hand combat. You’re either at work or you’re on your deathbed, and that suits me. I’m competitive. My husband jokes that I have that killer mentality. I don’t like to slow down. I practically go crazy waiting in line at Starbucks behind people who don’t know what to order. “Seriously? Let’s go! The menu is always the same!” I like a fast pace. I kept working the usual long hours until my fever spiked, then my husband started having symptoms, too. I called the Northwestern University COVID-19 hotline. They told me to go to the ER, but the ER said they didn’t have any tests. They told me to assume that I had it. They gave me painkillers and sent me home.
It was rough for my husband and me. We needed a steroid inhaler to help with our breathing. We ordered tons of Gatorade, and we didn’t leave the apartment for the first 20 days. We’d argue about who had to get out of bed to feed the dogs. But then after a few weeks, my husband started to feel better. He was going for runs again. He said: “Come on. At least come for a walk with me.” I tried. I tried to fake my way through. You get sick and you’re supposed to get better. That’s what happens. There was no other possibility in my mind. I went back to working remotely, but I couldn’t focus. I was so tired that I’d lie in bed and move my mouse so it looked like my computer screen was active. I’ve had concussions playing soccer, and it was that same kind of fogginess where your mind drifts off and you just stare at the wall. There was so much pressure in my head that it felt like I was hanging upside down. I was making a ton of silly mistakes in my job. Sometimes, when I would place large trades over the phone, I would forget what I was doing in the middle of the call. I’d mix up the day of the week. I was like: “OK. Something’s seriously wrong. Why am I not getting better?”
I’ve seen more doctors these last six months than I did for the first 30 years of my life. There’s hardly anybody that specializes in these symptoms yet. I have to be my own advocate, and it’s exhausting. I do my own research in COVID-19 forums online. I think I might have something called dysautonomia, where your brain stops telling the body how to do normal functions, but only a few doctors study that, and the wait-list for an appointment is more than two years. I managed to get in to see an internist in Chicago, but he sent me back to the emergency room, so that didn’t help. I found a rheumatologist, and she referred me to another rheumatologist, who sent me to a specialist out of state, and then he referred me to a cardiologist instead. I’m going around in circles looking for any kind of answer, but mostly it seems like they’re guessing. I’ve been told I might have Lyme disease, or something called POTS syndrome, or chronic fatigue, or fibromyalgia, or anxiety and depression. I have this big pillbox now, and a lot of the medications are still experimental, so we have to pay for them out of pocket. I take two antidepressants, vitamin D and a whole bunch of other stuff. My husband keeps track of the medications because it’s too much for me. He worked a connection to get me in to see a neuroinfectious-disease doctor. He assessed me and gave me a cognitive test, which I failed. He said 10% of people who get COVID-19 might end up having long-lasting neurological effects from this virus. He said: “It might be years before we fully understand it.”
If nobody knows what’s wrong, how do I get better? My vitals are usually normal. My lung scans look fine. My bloodwork turns out to be OK.
It sounds crazy, right? Am I crazy? I definitely have that psychological battle where I start to doubt everything. Could it all be in my head? I’ll tell myself I need to try harder. I’ll force myself out of bed, but then I get in the shower and the hot water turns my hands purple. My heart rate spikes. I get so dizzy I have to sit down.
I need help with everything. I can’t really drive. My husband and I moved out to the suburbs to be near my parents, and I have this great support system, but honestly, I feel like a burden. My husband is the full-time worker, full-time caretaker, full-time housekeeper. He’s been amazing, but we’re supposed to be starting our lives together, and now he has a little walkie-talkie to remind me about my medicine. He checks on me every hour, and meanwhile, I’m like this helpless 10-year-old just lounging in bed. The boredom is constant. I play some video games. I look online at house décor. One doctor told me arts and crafts could be a good way to keep my hands active, so that’s how I got through the holidays. On Halloween, I sat in bed and decorated paper pumpkins. I drew little scarecrows and taped them up on the wall. “Good work, Kaitlin! You’re using your brain. You should be so proud!”
It’s guilt. It’s anger and self-loathing. I have therapy once a week, and it helps. We’ve talked a lot about acceptance. I’m trying to accept that I’m not going to wake up one day feeling all better. I’m trying to let go of my expectations, but there’s grief in that. It feels like surrender.