Love what you see? Follow PGN so you never miss a story.
Find a list of long COVID clinics across the country here.
Extreme fatigue, pain, shortness of breath, brain fog, and cognitive dysfunction—these are just some of the symptoms associated with long COVID, an illness that has now affected up to 23 million Americans (the equivalent of the populations of Florida and New Mexico combined). Long COVID symptoms can be so debilitating that they have led around one million people in the U.S. to lose their jobs and completely upend their lives. But more than two years into the pandemic, there are still more questions than answers when it comes to the illness, including how to diagnose it. “It’s a clinical diagnosis, meaning that it’s based on symptoms that people report,” said Dr. Francesca Beaudoin, a Brown University professor and director of the Long COVID Initiative. “There’s not a diagnostic test, you can’t just do an X-ray, or CAT scan, or a blood test to tell you that you have long COVID, so it’s very challenging for people to get the diagnosis.”
We spoke to five long COVID patients across the United States about their experience with long COVID: their symptoms, how they’ve treated them, and how their lives have changed.
Age: 33 years old
Lives in: New York City
Giblin got COVID-19 in February 2021. It was a mild case; he didn’t have to go to the hospital, but he experienced severe back pain, fatigue, and a debilitating headache.
The very strong, constant migraine-level headache was the primary symptom that I was worried about, from one or two weeks, and then going forward for frankly, like, a few months. Imagine the worst hangover you’ve had, and just think if that persisted for more than a day or two—I was feeling that for a long time. There were times when I just kind of had to lay on my bed because if I got up, I would feel vertigo, the room would be spinning, I would feel like I was gonna pass out. It was a headache in such a way that it almost felt like it was because my blood wasn’t flowing properly.
Anybody can get through a really bad injury or an awful hangover because it’s temporary. But this felt very persistent and static. Just getting through everyday life was extremely challenging in those first few months because of the headaches and, eventually, the constant heart palpitations. I also had brain fog in the first month; it was very confusing to try to get through my days at work. A lot of my job is comparing one document to another, so that focusing was very taxing on my brain and also seemed to worsen my headaches at the time. Luckily, I don’t know why exactly it dissipated. But thank goodness it did. In those first few months, I was really worried about my ability to continue working and having independence and a livelihood. I felt like I was kind of on that trajectory where I was losing energy and heading toward being bed-bound or just about for a little while. But luckily, it didn’t get to that point. I did end up on medical leave for a few weeks last May.
I’ve probably seen five to 10 doctors over the past year. I had a handful of tests done, and most of them didn’t come back with anything too out of the ordinary. I also had my blood drawn for an NYU long COVID study run by Dr. David Lee last spring. Frankly, talking to Dr. Lee in the research setting has been generally far more helpful than talking to general practitioners and specialists. Some health care professionals have been dismissive because I kind of appear as young and healthy. Others have said things like, “it’s going to turn around very soon, the disease will just run its course.” But that is convenient and facile—telling people they’re going to get better after their bodies have been in a static state for such a long time is a little reductive. Now, I definitely don’t feel well, but I feel as though everything is much more manageable. I still don’t have the same energy envelopes that I had at the beginning of last year. I would love to someday return to that.
Liz Christine Santos
Age: 31 years old
Lives in: New Orleans
Profession: Human resources professional
Santos got COVID-19 in March 2020. A week after her symptoms started (cough, fever, and body aches), she began having chest pain and shortness of breath, which led her to urgent care.
Seven weeks after having COVID-19, I was going for runs and kept having chest pain. It eventually became so debilitating that I felt I couldn’t move. It hurt to move with my chest, to breathe, to talk. My heart rate was always elevated, my blood pressure was always high. I went to the emergency room because I thought I was having a heart attack: I probably went like 10 times total over two years. And they always did tests and were like, “oh, it’s anxiety” or “maybe you’re just stressed out?” And I just keep having debilitating chest pain. In New Orleans, every doctor would come back with tests that were clear. New Orleans had limited access to resources for long-haul COVID-19 in 2020 and 2021. So they were like, “listen, it sounds like you just have leftover COVID, but there’s nothing we really can do for you.”
I was at a point where I couldn’t take care of myself. Sometimes, my husband had to help me do seemingly simple things like doing my hair. It was also hard for me to work, even though I work from home. So, a month later, I decided to go home to New Jersey and live with my mom for a little bit. I started a COVID rehabilitation program at Saint Peter’s in New Brunswick. There, I was cleared by a pulmonary doctor, a cardiologist, and a neurologist; I had all the tests done, but nothing was coming up. But my chest still hurt; I couldn’t wear tight clothing, I couldn’t lean on my chest, it felt like I was suffocating. So they said maybe my chest muscles are so weak from getting sick, that I have to build up my muscle strength. So I would go to a physical therapist called Michael Phelan, who was phenomenal. He would first do massage therapy where my breathing muscles are. We would do very light stretches, and over time, we were able to add more exercises. After a couple months of walking, I was able to start doing a very light jog. I went there for five months, and I got better. So I went back home to New Orleans. And then a month or so later, it all got bad again: I can’t cook my own meals, I can’t clean, I can’t wash my hair some days. It’s two years later, and I have to start all over again, and it’s worse now than before. Now the chest pain spreads into my shoulders and hands. So I’m back in New Jersey. I’m starting a different rehabilitation program.
I had to go through a process of mourning the life I used to have and really trying to recreate it. I like gardening, running, and going out. But now I go to dinner by myself because I can’t risk getting infected again. But I also just have to slow down and be really kind to myself. On Saturdays, I would usually go grocery shopping and come home and cook a nice meal, but I can’t do that now; I have to pick one thing. I love my job, but there’s days where if I talk too much, I cannot move from my house because I hurt myself just from talking too much. At times, I’ve considered taking time off, but it’s hard because I found a job I love. So it’s like COVID’s taken a lot from me already; I don’t want it to take away my job, too. I would also love to have a family in the future, but that’s not something I can really consider right now.
Age: 64 years old
Lives in: Rochester, New York
Ann first got COVID-19 in October 2020. She experienced fatigue, loss of taste and smell, and chills.
When we got COVID-19, my husband’s temperature went up, mine went down. Eventually, his oxygen was very low and his temperature very high. He decided to take a shower to clean up in case he was going to call an ambulance. By the time he got out of the shower, he couldn’t breathe at all. The ambulance took him to the hospital, and unfortunately, he passed away on Thanksgiving of 2020. He didn’t make it home. We were inseparable since we were 15. We spent every day, 24 hours a day together.
Some things that are hard, I don’t know if it’s because I’m a widow now, or COVID-19. But I still get the chills; I think my internal temperature was reset and lowered because I’m always in three or four layers of clothes, and I’m usually still cold. It was 89 degrees last summer, and I was out doing yard work with shorts and a T-shirt, and I came in and I ended up putting on long underwear, long pants, and three layers on top. I kind of looked around and realized, oh my gosh, everybody’s in tank tops and shorts. And I got a little embarrassed, but I was freezing. I have an electric throw blanket, and I’ll just sit under that sometimes for a half hour to warm up. I still can’t taste or smell most of the time. Or things just taste awful. Even fruits and vegetables: I had carrots one day and they tasted like metal, so I had to spit them out. I can eat scrambled eggs, and they’re okay one day and the next day they just taste like metal. It’s kind of gross. I also have issues with my balance. If I move too fast, or if I bend over to pick something up, if I stand up too quickly, I have zero balance. The imbalance and the temperature has not changed at all over time. The only thing that’s changed is my taste. And that might last for five or 10 minutes or might last for a few hours. And that’s it, it’s gone again.
I have not been to any long COVID doctors or clinics. I’m not sure if there’s any in the Rochester area. Both my GI doctor and my primary care doctor are in agreement that it seems like there is a neurological disconnect in my brain because of COVID-19, and it must have reset my body temperature. I keep waiting. I keep thinking all of this is gonna go away, but I’m starting to lose a little hope now.
Age: 34 years old
Lives in: Columbus, Ohio
Profession: Former occupational therapist
Misko first got COVID-19 in October 2020. She had pneumonia in both her lungs and had to go to the ER.
I was an occupational therapist in a hospital but never returned to work after getting long COVID, and I lost my job due to being so sick. I was healthy and had no medical issues. I was very active and enjoyed hiking, travel, kayaking. Instead of getting better from my initial infection, I started getting worse. I remember during my COVID-19 infection I could climb the stairs, shower daily, talk on the phone. A month and a half later, I could not even get up out of bed and walk five feet. My husband had to comb my hair because I could not hold my arms up. I drank tea through a straw because I could not hold a mug. None of that was present during my initial infection. Long COVID feels like someone switched out your body with someone else’s. And then everyone’s texting you daily asking if you’re better yet.
My current symptoms include post-exertional malaise (PEM), fatigue, orthostatic tachycardia, light and sound sensitivity, nausea and gastrointestinal issues, neuropathy, headaches, insomnia, temperature regulation issues, muscle pain and joint pain, and issues with concentration. I would do anything to go hiking again, but I can’t because of PEM (by far the worst symptom), which will cause a relapse where I will become bedridden for days to months. The last relapse I had was possibly caused by putting laundry away into a closet and doing dishes in the same day, and it lasted for about two months.
Making it through this is a game of restraint, and restraint takes a lot of strength. I have to hold back every minute of every day on things I want to do. Healthy people really don’t get what that means. An example is making a Crockpot of soup: I would have to open the canned goods, after which my forearms will feel like I just went rock climbing, then go and lay down for 15 minutes, then cut up one carrot, then lay down again for 15 minutes, then put the items into the Crockpot and turn it on, then lay down again for 15 minutes. And that’s the one “big event” for the entire day. After everything you do that’s out of your normal small routine, you think, “will this make me incredibly sick in one or two days?” It’s hard to enjoy a moment when you live like that.
Meanwhile, my PCP was clueless and gave me the phone number for a psychiatric hospital. Two cardiologists I saw were also clueless. My OB-GYN knew more about vascular issues with long COVID than any other doctor I saw. I have been seeing a doctor over telehealth who is out of state, so that’s been a total out-of-pocket cost not covered by insurance. She specializes in post-viral illness and myalgic encephalomyelitis. I feel better physically than I did in the first six months, but I can’t really do a lot more. I have lost my entire life. I do expect and hope for a treatment to increase my functionality and quality of life—because the extremely poor quality of life right now, this is not sustainable, at all.
Lives in: New York City
Profession: Assistant and nanny
Geraci got COVID-19 in December 2021. She had body aches, cough, dizziness, loss of appetite, and internal tremors.
A few days after my symptoms started, I began feeling like everything inside me was shaking, and this made me panic a little. It felt as if my body was a phone on vibration mode, so I couldn’t even sleep. I went to the ER, and they told me it was part of COVID, and that it would go away, but my insomnia continued. I felt dizzy when closing my eyes and constantly wanted to throw up. Plus, I continued to feel the buzzing, the internal tremors. At that point I was crying because I was desperate for sleep; I was scared that I was going to stay this way, and I still have that fear.
I went to a neurologist, and he prescribed pills to help me sleep. That finally helped me because they made my internal tremors less intense. I went back to work taking care of kids. But I still feel the internal tremors. It’s a roller coaster because I have good days and bad days. Sometimes I feel it in my stomach and my arms, and then in my chest, and I feel like I have a tic when I close my eyes.
So far, I’ve seen two neurologists, one primary care doctor, an allergy doctor, a lung specialist, and a long COVID doctor. But all because my insurance allows it. Thank God I do have good insurance. I did an MRI, everything looked fine. I also did lung tests, and they were fine, too. The problem is that the neurologist I first saw doesn’t believe in long COVID: He told me to go to a psychiatrist and a therapist. My primary care doctor said it was probably anxiety and asked me to “think positive.” But I’m thinking positive, and I don’t have a history of depression or anxiety. It was kind of like a slap in the face: You know your body and you know when something’s wrong, but they dismiss you.
I started going to several long COVID programs and clinics: I went to two programs in NYC, at Mount Sinai and NYU. They’re more understanding at those programs. They said that COVID-19 inflames some systems in our bodies, so my doctor recommended anti-inflammatory foods. I started eating a lot of fiber and stopped having meat, carbs, sugar, or anything that’s processed. I also started acupuncture. I try not to work too late because the doctors said I should try to sleep at the same time every night to continue to stay balanced, so I work mostly in the afternoons. I don’t want to work too late because I don’t want to get insomnia again, so that restricts me. I can’t go eat dinner with my husband at a restaurant like before because I can’t eat after certain hours. I prefer not to risk it. The same way the government invested in developing the vaccine, they should invest in long COVID clinics and treating it because people are suffering. My life has changed completely. It seems like a nightmare sometimes. But I have faith, and I know this will go away one day.