What’s It Like to Live with Covid-19 for a Long Time? Here’s My Friend’s Story.

Michelle L. Frisco, Ph.D. is a Professor of Sociology & Demography at Penn State University. She is also a research associate at Penn State’s Population Research Institute. Her research focuses on issues related to population health.

I was asked to do some research about people who live with Covid-19 symptoms for a long time by an amazing group of academic women who have joined together to develop “Dear Pandemic.” If you aren’t following them on Twitter, Facebook, or Instagram, I highly recommend them! They asked me to see what we know about long-term Covid-19 symptoms. I dug into the very scarce research. I also interviewed a friend who is still unfortunately exhibiting Covid-19 symptoms 136 days after becoming infected.

Studies of individuals struggling with long-term Covid-19 are in short supply right now. I only found 1 report and one JAMA article. There are also a lot of interviews being published in news outlets right now that are easy to search using Google. What we can glean from the studies, which likely over-represent very ill Covid-19 patients, is still telling of how much we don’t understand about the disease. A survey of 640 people with symptoms lasting longer than 2 weeks found that the average recovery time from Covid-19 was 27 days and of those not yet recovered, the average number of days with symptoms was 40 days. One third of respondents were still managing symptoms 7 weeks after contracting Covid-19. In this sample, 82% of respondents were 20–59 years old and only 57.8% had a pre-existing condition. The just-released JAMA study of formerly hospitalized Italian Covid-19 survivors also found that roughly 2 months after Covid-19 onset, 87.4% of patients still reported symptoms and 44% reported a worsened quality of life.

What did I learn from my friend? I learned that I wouldn’t wish his experience on anyone. Here is my interview with him. I am grateful he was willing to share his story:

Me: Chris, thanks so much for agreeing to talk to me for Dear Pandemic. Can you tell readers a little bit about yourself?

Chris: I’m 45, have a wife and two kids and have no pre-existing conditions, but Covid-19 has had me sick for a very long time.

Me: When did you get sick?

Chris: February 26th.

Me: Where do you think you got sick?

Chris: I’m not sure. Either in the Geneva Airport or in the Alps in France just north of the center of the Italian outbreak.

Me: Do you know what your exposure was?

Chris: Not really. Maybe in a ski gondola? Maybe the airport? Maybe one of the restaurants my family and I ate at when we were in the Alps? I’m not sure. We were mostly outside and wearing masks while skiing. We flew before there were full precautions in place but we had just been hearing more about Covid so we wiped down our seats and area around us on the planes when we traveled.

Me: Were you the only person in your family who got sick?

Chris: I was the only one to have strong symptoms and to end up with long-term symptoms. My wife had mild symptoms.

Me: What about your two children?

Chris: I’m not sure. They didn’t have immediate symptoms.

Me: Today is July 9th. Are you still having symptoms? If so, what are they?

Chris: Yes I am still having symptoms. The big one is the feeling of pressure in my chest. This has been constant since February 26th. I also have a nice accompanying cough that won’t go away. Beyond that, it gets more complicated.

Me: Why? Tell me more.

Chris: Well I knew I was sick when I had the classic Covid-19 symptoms on February 26th — fever, coughing, and fatigue. That only lasted about 2 days and it wasn’t that bad. Then in March I began to experience a series of setbacks and improvements. What would happen is I would do exercise and I would get a burning sensation in my lungs like I had been doing really intense sprints at maximum effort even though I was doing a very slow jog. Then it got worse. By April a gentle walk had that effect and then next day I would feel like I got hit by a truck. I had no energy. I would feel terrible with some flu-like symptoms like aches, loss of appetite, and fatigue. This would last for a few days then I would feel better then worse. It happened in cycles. On a flat, easy paced bike ride in April I was using an inhaler. That normally wouldn’t have even caused me to breathe heavy.

So eventually, I stopped doing exercise because I didn’t want to trigger these attacks. So I didn’t see more attacks because I quit exercising. Then I increasingly felt unwell and thought it may be because I wasn’t exercising, but on April 26th I woke up in the middle of the night with my arm asleep and the right side of my face drooping. After a few minutes of concern, I passed out and hit my head on the bathroom floor. I sustained a traumatic brain injury and neck injury that lead to 45 hours in the ER mostly ruling out horrible things that could be wrong with me. The brain injury was a hematoma on the cerebrum, but was stable. The neck injury was whiplash and fortunately not a fracture.

Me: Did you have a stroke?

Chris: If you ask a cardiologist, I probably didn’t have a stroke. If you ask a pulmonologist, I almost certainly had a stroke. I know this because I’ve been seen by a cardiologist and two pulmonologists. My cardio work-up was ok, which lead my pulmonologists to think I had a mini-stroke or a vasovagel reaction, but the drooping face suggests mini-stroke.

Me: This sounds like an awful lot of uncertainty.

Chris: Yes, and it is part of the “fun.” There is a lot of uncertainty around what has happened to me and disagreement by doctors I’ve seen on exactly what’s going on with my health. There are things going on with my brain, lungs, heart, etc. that could kill me and I don’t know if any of them are serious or if I just need time. So I’m just navigating the medical system over and over and over again.

Me: Where are you today?

Chris: I’m now seeing a pulmonologist and a neurologist and a physical therapist. Pulmonologists at Hopkins are working with people like me recovering from long-term Covid-19 symptoms. My pulmonologist isn’t sure what she can do to help me. My neurologist is trying to figure out what to do with my long-term cognitive and related neurological conditions including an inability to focus, continued fatigue, intensified anxiety, etc. It’s not clear whether these are Covid-related or the result of my head injury, but the head injury is Covid-related so it all goes back to Covid-19.

I’m finally feeling like I have a little bit of a plan. I’m working with good people. Today I feel like I got hit by a truck because I worked with a physical therapist for the first time yesterday. My energy reserves are still easily drained. I can do things that used to be normal for me like a 20k bike ride, but then an easy day the next day sees me taking a nap, falling asleep right after dinner, and not able to play with my kids. I’m just wiped out. I don’t know if this is neurological, related to pulmonary function or something else. So many things are wrong and so many outcomes are uncertain. It’s just not clear what is and isn’t related.

Me: Are you working?

Chris: No, I worked through April until the head injury. The neurologist expects me to be able to begin working part-time as early as in August but he thinks it will have to be part-time so I’m likely to take a medical leave until December. At this point, I can’t look at a computer screen for more than a few minutes. I can’t watch movies. I tried playing with a Rubik’s cube and it made me sick after not very long.

Me: Have you joined one of the online support groups?

Chris: No. The head injury leaves me with less emotional control. Reading news or learning about all of the things that could also be wrong with me is unproductive and sends me into these anxiety tailspins that I am not well suited to handling. I’m not a worrier. Before I got sick I was probably a person who didn’t worry enough so I don’t have a lot of practice managing this kind of anxiety loop. One of the worst parts of this loop is when I wake up with my right arm numb, the way it did when I blacked out and hurt my head. Even though this is just nerve pain and I can now identify it as such, it sends a jolt of anxiety about having a stroke that is hard to overcome. I also now generally have been having problems sleeping. It’s hard to get comfortable because of my lungs and head injury. So, this has led to less sleep and more anxiety attacks, too.

I am really glad the support groups like the Survivor Corps and Body Politic Covid-19 group exist, though. I am also glad people are speaking out. There was an Atlantic Monthly article was really helpful because I felt heard. I felt like I wasn’t being crazy and I felt less invisible knowing other people were going through this. That’s really important.

You hear people say the quarantine is worse than the disease. Obviously that’s not true for the intubated and the dead and when I first got sick, I though, this wasn’t that bad. But now? It’s been life changing.

Me: Chris I am so so sorry. Is there anything you want the people who read this to know?

Chris: Yes. As an athletic 45 year-old with no pre-existing conditions, my life has been turned upside down for the last 136 days and counting. My identity as a scholar and athlete have been taken away from me and what’s left is someone I don’t really know any more. If I lose the mandolin, key to another chunk of my identity that I value, I’m really done. And on bad days when the nerve pain in my hands is bad I can’t do more than just hold the instrument. I am working hard to make sure that doesn’t get worse, but it is always cyclical, always ups and downs.

Me: You know I’m rooting for you and I’m sure all of the Dear Pandemic readers are, too. Thanks so much for sharing your story with this Nerdy Girl.