Three years into the coronavirus pandemic, many are behaving like life is “back to normal.” But for the millions of people throughout the world affected by long COVID, an ongoing set of often-debilitating health problems tied to an earlier COVID infection, “normal” feels like an elusive, uphill battle.
“For most patients, this is a stuttering process: Some days OK, some really bad,” said Christian Sandrock, a pulmonary, critical care and infectious disease physician and professor of medicine at the University of California, Davis.
Though the complications are varied, long COVID generally plays out in a combination of profound fatigue, tiredness and inability to do the things you need to take care of yourself, Sandrock told HuffPost.
“From my patients, this includes extreme exhaustion, inability to think and, when they do apply themselves, they are completely spent and exhausted even after a short period of time,” Sandrock said. “In some cases, they have chest pain, palpitations and shortness of breath that can limit work or simple activity.”
There can be a light at the end of the tunnel. “Over a period of time, as we treat and improve, we hope to see a general upward trajectory,” Sandrock said. “Meaning, if you look back one to two months, despite good and bad days, you should be a little better.”
Despite being a nationally recognised condition, because of the variance of the symptoms, those suffering from long COVID have often had their symptoms underdiagnosed or dismissed by family and friends, employers and by some in the medical community.
“It’s true that there is still so much we do not know about this topic and we are trying to improve over time. A lot remains unknown,” Sandrock said. “But it is clear that patients with long COVID have brain inflammation and this is likely the driver of symptoms.”
To get a better understanding of what living with long COVID is like, we asked readers with long COVID to share what it physically feels like for them. Below, they share their experiences in their own words. Responses have been edited lightly for clarity and length, and some last names have been omitted for privacy.
Owen White, 33
“I got COVID in December 2021, but it took a few months for long COVID to kick in. Now I wake up each morning feeling like I’m at the bottom of a swimming pool. I fight through the feeling of a double hangover and make it to my workplace. Sometimes the elevator is out of order; if so, I will probably have to skip lunch, since I can’t afford to climb the stairs more than once without risking a day’s long crash. It’s like I have to get all my energy from a loan shark, and when I live beyond my means, I pay a serious price.”
Hannah, 31
“My COVID case last summer was mild. I felt worse and worse as the days went on, but by Day Six or Seven I started to turn a corner. I was advised by my doctor to go to the ER due to experiencing trouble breathing, but my oxygen level never went below 98 and I was sent home.
“That was nearly 10 months ago and I’m still experiencing issues. Last fall, I went on a jog and started having a hard time breathing. I had jogged this route so many times and previously hadn’t felt as out of breath or as tired as I did that day. As I was running, I kept feeling like I couldn’t take a deep breath, but rather many shallow breaths trying to accommodate my lungs. I actually wasn’t sure if I would be able to make it back to my house without first napping on the sidewalk. I was telling someone about the experience and they asked if I had long COVID. It never occurred to me, but I brought the incident up at my next pulmonology visit. My pulmonologist uttered the words ‘long COVID’ and I was so confused. I didn’t understand how I could have long COVID when my case was mild?
“I essentially have inflammation in my lungs. If I had to describe the feeling, I would equate it to an elephant sitting on my chest. There’s a pressure in my chest where it feels like no matter how hard I try, I’m unable to take a deep breath. My breath will only go so far before I have to force a deep breath. I don’t experience my symptoms on a regular basis. One day, I could be feeling great and the next, I feel winded from going up the stairs or walking from room to room in my house. At times I have to stop and catch my breath, which is frustrating because I am 31 and fairly active. Whether or not I’ll be able to breathe is factored into my plans and decisions now. It’s scary.”
Byn, 51
“I have been dealing with long COVID for three years now. I can’t believe it’s been that long. It started back in 2020, with three months of severe fatigue. Meaning I could not even get out of bed and walk to the kitchen without being out of breath. I suddenly started having migraines regularly; I lost my sense of taste and smell; I was severely sensitive to light. And I had to spend the majority of my time in a dark room with all the lights and screens off or dimmed with extra filters. These symptoms seem to come and go, but even in the best of times, I am nowhere near the level of health I was pre-COVID.
“Once a crash or a relapse hits, I am often stuck in this phase for at least two to three months. I may have days where I’m feeling energetic, but even at that point, my ability to accomplish things and function is just a very small percentage of my day.
“If I continue to push instead of rest, I end up with severe tremors, a stutter that makes it nearly impossible to communicate, and I need to use a walker. Once, I ended up in the hospital for a week, unable to walk unassisted or speak clearly when I pushed too hard and didn’t rest.
“I was healthy before COVID. I really ever got sick, and when I did, I was better within just a few days. Even if I got a horrible flu I would be sick for a week and then it was over. That’s all gone now. And to be clear, because people always comment on it, this happened long before I ever got a vaccine. I was struggling with long COVID symptoms for a year before I finally got the vaccine.”
Below, a video of Byn talking about a long COVID relapse.
Jennifer Vilchiz, 29
“Prior to this illness I was super healthy. I was a sprinter, a showcasing artist. I worked a job I really loved and had endless energy. I have had long COVID for a year now and it is absolutely horrifying and has changed my life completely. It feels like something completely evil latching on to you and never letting you go. You feel like you permanently have a hangover mixed with fatigue and severe dizziness. You live in fear each moment because of the uncertainty of how severe a symptom will get before you need to take yourself to the hospital.
“There are days where it feels like my brain is fried and cannot recall things as normally as I would. It has robbed my ability to live in peace, to enjoy life with my family and friends. And it hurts to see those you love also become anxious. I even made an art piece dedicating it to all the COVID long haulers out there. ”
Devin Russell, 37
“Long COVID has been a roller coaster of shifting symptoms. From an upset GI, to cognitive issues, to inflammation and pain to nervous system problems, it’s beaten me up in every way. Some of the most prominent symptoms I’ve had are the cognitive dysfunction, which at one point bordered on delirium or dementia-type experiences. Putting keys in the fridge, forgetting people’s names, not being able to recall words mid sentence, and just completely out of it. Like my head was empty.
“The Guillain-Barré syndrome-type symptoms I had were awful as well. I remember Thanksgiving 2020 I was unable to drive to see my family because I could barely move. I was just lying there concentrating on my breathing as I felt I had to remind my body to do so. My arms and legs especially were not completely under my control. Vomiting was another issue I had for a while. I had to be really careful what I ate, and even then it didn’t always matter. I lost 28 pounds at one point, from a slightly low weight already. I still have up and down days, without the downs being as extreme as they used to be, but significant enough to restrict me.”
Marguerite Stevenson, 28
“Physically, it’s awful. I know it has started when suddenly my heart rate increases and intensifies and won’t slow down for weeks. Recently, it has started to ease down to several days. I constantly feel like I am about to have a heart attack. Sleep is impossible because my heart is always racing. I feel a fundamental fatigue that emanates from my nerves. Making a cup of tea feels about as difficult as lifting a Ford pickup truck. In the shower, I have to lean on the wall, or sit down, because I am too tired and dizzy to make it through.
“A short walk is impossible, both because I am too exhausted to make it, and because vertigo has betrayed me. Everything around me constantly twists and loses its stability — only I know it isn’t the world around me that’s changed. It’s me. I look fine, but I am physically crippled. There is no apparent reason why, only this way of living was completely alien to me until I caught that virus. The only constant through this is my heart — pounding through my body, reminding me it is keeping me alive.
“Like I said, physically, it’s bad. But mentally, it might be worse. My mind is the one thing I have always been able to rely upon. But when the fatigue that controls every aspect of my physical existence returns to my body, it reigns over my mind, too. There is a fog I cannot penetrate. I can’t remember what happened to me yesterday, what made me so happy in that conversation with ... who was that again? I’m slow now. The connections I used to be able to make so quickly — the things that made me love philosophy, and those late-night conversations on politics and religion and what this whole life thing is all about — where those connections once were is now a tired, empty fog. I used to be able to think, I remember. But what ever did I think about? I used to be someone. I just don’t remember who.
“I’m one of the lucky ones. Eventually the fog lifts from my brain and my body, and I am back to normal, for a while. Until it comes back again. My greatest hope now is that the waves will continue to slow down and soften, and one day they just won’t come back at all.”
Signe Redfield, 52
“When I have chest tightness and inflammation, I can’t take a deep breath. I haven’t been able to yawn since I got COVID, so when I need to yawn I stand like Supergirl in a vain attempt to get air deeper into my chest.
“It’s so hard to describe the crushing fatigue. It’s like the third day of the flu when your leg muscles are jelly. It’s like taking an old-school antihistamine, where 20 minutes later you’re fast asleep drooling into your plate because you just couldn’t keep your eyes open. It’s like the first time you take muscle relaxants and your whole body feels 100 times as heavy as usual. And your brain stops working when you’re vertical ― every neuron is focused entirely on managing your muscles so you don’t fall down, so even if you can think when you’re lying down, standing up makes it impossible to do anything other than obsess over how to not be standing anymore. I didn’t start getting noticeably better until I rested enough for the fatigue to go away, and even now it comes back if I overdo it.
“My movement can get jerky. I couldn’t figure out how to control my muscles smoothly. Certain movements triggered bad symptoms ― anything that involved bending over or twisting to lift things caused a feeling like something in my body and/or brain was slipping, like a bicycle chain slipping a gear.
“I’ve had so many kinds of headaches ― the little stabby ones like someone’s sticking a small knife into your skull that only last a few minutes, the ones that feel like your entire sinuses are raw, the migraines, the stabbing pain down the back of your neck.
“The recovery process is the weirdest. It’s the slowest thing I’ve ever experienced. Pregnancy takes nine months, but you get growth spurts and pauses. With long COVID, it’s like every minute, every hour, every day is like a Wile E. Coyote cartoon: Everything’s fine, and then a group of symptoms hits like an anvil dropping on you.
“Over time, you start noticing you can do more for the same level of symptoms, or maybe one symptom is getting noticeably better than it was three months or a year ago. I measured in how much work I was able to do: It took months of rest and pacing and gentle adaptive activity to go from five hours of work a day to five and a half hours of work a day without making my physical and cognitive symptoms worse.
“Multitasking was gone. I went from transcribing stream of consciousness notes in meetings without shorthand to not being able to hear what my husband was saying while I was composing a text. It was like the buffer was gone. I’d reach back into my short-term memory buffer of what he’d been saying and find it full of static.
“If you look at your symptoms this month and last month, it’s really almost impossible to tell whether you’re getting better or worse.”