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 recognized 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 dayslong 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.