Anisa Khalifa: It’s been nearly two years since COVID vaccines rolled out to the public. They were, for many, a way back to normal life. And most people have returned to something like before. But not all of us…
Eleanor Spicer Rice: It's enough weird symptoms that you can start to think you're losing your mind.
Anisa Khalifa: That's Eleanor Spicer Rice, a long COVID patient I spoke to last year. She’s among a group of patients and doctors we've been following in an effort to track how we’re treating and living with the illness. I'm Anisa Khalifa. This week on the Broadside: the silent second pandemic of long COVID… and the long climb back to a semblance of health.
Anisa Khalifa: Hey, Jason.
Jason deBruyn: Hello.
Anisa Khalifa: Can you introduce yourself for listeners?
Jason deBruyn: Yes, my name is Jason deBruyn. And I am the health reporter for North Carolina public radio.
Anisa Khalifa: And could you tell us, because we've reported about long COVID before together, and you've also been reporting about it for a long time. Can you give us a little overview of our past coverage on this topic?
Jason deBruyn: Glad to. Yeah, so long COVID is something that I think people maybe have heard of know generally about, but probably don't quite appreciate how bad it is and how bad it can be. It affects only a small number of people who get COVID. But, you know, a small number is still like 1 to 2%. So based on the fact that basically everybody at this point has had COVID, we're looking at potentially hundreds of thousands, or even millions of Americans who might have long COVID symptoms.
So this is an issue that I think people don't quite understand enough about. Long COVID symptoms can be debilitating. And I do not use that word lightly. In some of our past coverage we've talked to people who go weeks with getting winded if they walk like to the fridge, who have such severe brain fog, that they'll go an entire day and forget entire chunks of it. Again, in some cases, I think people might hear what I'm saying and think, oh, that's sort of an exaggeration, it is not. This is something that's going to be with us as a society, potentially for years or possibly even decades, as COVID remains a part of our lives and is in some ways, sort of just accepted as a normal part of our lives going forward.
Anisa Khalifa: So you did an update on this in the summer this year. And you went back to talk to the folks at the UNC long COVID clinic. What did you hear from the clinic director, Dr. John Barrata, about what has changed in their understanding of long COVID in the last year?
Jason deBruyn: I don't want to say not much, because certainly they have learned some. But the fundamental things remain. You want to avoid getting COVID to begin with.John Baratta: Anyone who gets COVID is at risk for long COVID. So the best way to prevent long COVID is to avoid COVID. There does seem to be an accumulating risk for those with multiple COVID infections. So some of our people who develop long COVID seem to be fine after their first or maybe even second COVID illness. But it might not have been until their subsequent second or third COVID illness that they then went on to develop long-term symptoms. So it does seem that there is an accumulating risk for people who have multiple infections.
Jason deBruyn: You want to get vaccinated. It appears that does reduce your chances of getting long COVID. And the other main thing that they've learned is how to sort of address some of these persistent symptoms. So they can do a better job of addressing the symptoms that you're feeling. But that still doesn't do much to address the underlying, you know, what causes long COVID?
Anisa Khalifa: And do they know yet what exactly causes someone to get long COVID in the first place?
Jason deBruyn: Yeah, it’s still kind of poorly understood, to be honest. Again, they are learning more, and treatment is getting better, I think every day, but it's still, you know, the special sauce of how long COVID impacts one person and doesn't impact another person is still not really well understood.
Anisa Khalifa: You've talked and we've talked in the past about different symptoms, like neurological symptoms, like brain fog, memory loss, and then also fatigue, you know, those kinds of physical symptoms. So what kind of treatments does the clinic provide for patients?
Jason deBruyn: Yeah, so it looks very much like a rehab clinic, you know, they have a gym, they have like a driving simulator, where people who, you know, literally are almost forgetting how to drive can go and practice driving. Dr. John Baratta: And this allows our therapists to assess a patient's safety with driving.
(SOUND OF DRIVING SIMULATOR CRASHING)
Driving Simulator AI: You have gone too far off the road.
Jason deBruyn: They have a kitchen. A lot of times, there's people who will say that they just have forgotten recipes. You know, people who have been cooks or bakers their whole lives, all of a sudden, they're forgetting recipes. And so they have a whole kitchen setup, where somebody can, like just practice baking a cake or something like that. But really, it's just like a very standard rehab clinic where people can lift weights or jog around a track or again, we talked about some of the neurological aspects. But yeah, of course, all of this under the supervision of a physician who's helping you sort of build back almost from zero, you know. Think of somebody that goes to rehab after I don't know, tearing an ACL or something like that. I mean, it's very similar to something like that.
Anisa Khalifa: One of the other things is when you're dealing with something like lawn COVID And, you know, we've heard from people who suffered from it before that a lot of times people don't believe them, and that can even include medical professionals. What did you hear from the folks at the clinic about, you know, what the patients need and how they can be supported in that way?
Jason deBruyn: Yeah, that's a really big problem as well. Because I think as I was saying, you know, the symptoms can seem like just sort of normal daily, Oh I'm tired, right? Oh, you have like I said, Oh, you have some brain fog. Well, shoot, I forget things too. Oh, you're fatigued? Oh, yeah, well, I'm tired too. That's not it, right? These symptoms are very, very severe brain fog, severe memory loss, severe fatigue. And what some people are finding is that even their primary care physicians are not quite believing them. Some of their family members are not quite believing them and saying that they're maybe just being lazy or, again, hey, you're just forgetful, like that happens, you know, snap out of it.
And when they get in touch with people at this clinic, one big thing is just that they're believed that their symptoms are accepted for what they are, and understood in a way that is comforting and refreshing. And instead of sort of, like kicking yourself and saying, Oh, I gotta get up, I gotta go to work. But I'm, I'm so tired. But nobody really understands that. I just got to push through. Instead of having that mindset, being with a provider, or a nurse or somebody who says, Yes, we recognize that what you're going through is very difficult. But let's work through it together. Right? I understand. I recognize, I acknowledge your symptoms. Now let's try to improve those symptoms and make them less and less each day or week. And I think just that simple step has been huge for a lot of people.
Anisa Khalifa: Yeah, that validation is such a big part of the healing process.
Jason deBruyn: Yeah, that's a great word for it. Yeah, validation. Perfect word.
Anisa Khalifa: Could you share — obviously, you've referred to this, but could you share some of the stories that have stood out to you during your coverage of this over the last couple of years?
Jason deBruyn: There are two in particular that stood out to me. People who know me know that I played sports, I still play soccer. So I, you know, I like getting out, like running around. There's a football player that we spoke with, his name is Justin Foster, played high level college football. I mean, he played for Clemson. I mean, this is this is a high level college athlete who went from again, playing at Clemson going to the weight room, training with his teammates, to getting winded on just like a short little one mile run.
Unidentified Sports Announcer: And it was picked up out of the air by Justin Foster! Pretty athletic move there with a ball in the air for a 250 pound guy to come up with it.
Justin Foster: I was just always fatigued all the time. When I would get fatigued and I'm trying to do something to push myself, my heart rate would elevate. And sometimes my heart rate, when I was at football, my heart rate reached in the 200s, a couple of different times. No reason why other than every doctor, I mean, we did all the heart studies and all that. And the only thing that they can say was COVID.
Jason deBruyn: He was open about his symptoms. And that was I think, refreshing as a reporter. But just as an athlete identified so strongly with his struggles, and that was one that really stood out to me. Another person that comes to mind is Eleanor Spicer Rice, this is a person that we chatted with more than a year ago now. Intelligent woman, has a great career, a great family. And she was again, open about how, you know, she just couldn't remember things from day to day. And I think we all sometimes it gets tricky to talk about some of these symptoms, because we all have brain fog sometimes, right? I mean, we all forget why we went into the kitchen, right? That happens to everybody.
But to have that happen for hours at a time lasting for weeks and months. I mean, these stories are really just sort of opened my eyes to these are not just a handful of symptoms that people suffer, you know, for a couple of days, like a runny nose. I mean, these are serious, serious symptoms that can affect people for weeks, months, or now or even learning, possibly years after an initial COVID of infection.
Anisa Khalifa: After a short break, we'll catch up with Eleanor about how she's been doing since she told me her story last year — and what speaking and writing about long COVID has meant to her.
Eleanor Spicer Rice: My name is Eleanor Spicer Rice. And I have had long COVID symptoms for over two years now.
Anisa Khalifa: So this is our second time talking about this. I spoke to you a little over a year ago now I think and you talk to me about your experience with long COVID then and I think it's one of the more powerful interviews I've ever done. I was thinking about it for a long time. And can you tell me, like, what has your journey with long COVID been since then?
Eleanor Spicer Rice: Since we last spoke?
Anisa Khalifa: Since we last spoke.
Eleanor Spicer Rice: So as of today, I am better, but I'm not 100%. And I think that this is going to be where I am, maybe for the rest of my life. I don't know, we don't know, there's so many unknowns. It's normal for long COVID to last a couple of weeks. But it's also normal for it to last a couple of — a few months. And it's also normal, now we're finding out for it to last years or longer. So this could be who I am now.
Anisa Khalifa: Would you mind sharing what that sort of baseline looks like for you now?
Eleanor Spicer Rice: Sure. One of my symptoms is that I'm very tired, a lot. I'm so tired that I worry about sleep all the time. So much so that I worry about going out. I don't want to go anywhere at night, because I'm scared that it will mess up my sleep. Another thing that I have is that my mental state is still kind of disheveled, but it's nowhere near where it was a year ago. And it's certainly nowhere near where it was two years ago. So I can write down a grocery list now, which is thrilling to me.
But I still miss appointments sometimes, which is unlike pre-COVID me. I still can't remember who people are. I still I've found that there are a lot of memories for me that were never recorded over the last two years. So I went to Thanksgiving last year at my in law's house. And they kept saying, Well, are you going to do this like you did last year, are you gonna make name tags like you did last year? I have zero recollection of name tags, nor do I remember Thanksgiving at all. I mean, it sounds like me. But I don't have that. And that's been really tricky for me. I love stories. I love to remember other people's stories. And I love, you know, that I have my own stories. But a lot of those are just gone. They're just not there. So those are my symptoms now.
Anisa Khalifa: So my colleague, Jason Debruyn, who's our healthcare reporter spoke to Dr. John Barrata at the UNC long COVID. And he told him that they've refined their treatments over the last year, but that their treatments haven't really changed that much. Have you felt like the long COVID clinics have been a good resource for you while you've been dealing with this?
Eleanor Spicer Rice: Yes, I only went for the first year. And what was good for me was that they placed me and my symptoms on a continuum of long COVID symptoms. So I went from being the only person I know who feels like this, maybe one or two other people that I've met, to seeing exactly where my symptoms fall, and what's normal, which it turns out that anything goes. So any of your symptoms are normal, because they're all like, basically anything can happen to you. So that was very good for me. And they also hook you up with some specialists. And that will help you to make sure that you're not losing your mind. Basically.
Anisa Khalifa: You've been really open and vulnerable and sharing your story with us. But you're also a science writer. And I'd be remiss not asking your opinion about the developing research about long COVID. What do you think it means for us to deal with a disease that has gone from pandemic to now endemic?
And you know, one of the things that we learned from Dr. Barrata, is they're seeing now that the more times you get COVID, the higher your risk is for long COVID. Which I'm not sure if you had heard that. It's the first time I had heard it. And he was saying like, it doesn't necessarily correlate with the severity of your infection, either. As someone who studies science and who thinks about, you know, how these things develop over time, what do you think about this?
Eleanor Spicer Rice: I think that now is not the time for anybody to be playing fast and loose with their health. And you don't have to, you can take precautions, you can keep yourself home, if you're sick. You can get vaccinated if you need to get vaccinated, and you can protect the people who are vulnerable that you love, and that are people that you don't know who are vulnerable in these ways. I think it's really important that we all work together to make sure that what's happened to me doesn't happen to you.
Anisa Khalifa: Is there anything that I didn't ask you about that you'd like to talk about?
Eleanor Spicer Rice: Most of my friends who have long COVID still have on COVID that I made in the beginning, they still have them. And because of things like this show, and because of things — I get to write about it, which a lot of people don't get to do. People from all over the country who have had long COVID call me and people think that they're dying. And there's so many people who have things happening to their minds or bodies and it's frightening to them because they're alone in this because they don't realize that there are so many of us out there that are experiencing this.
And I want them to know that they're not crazy when they're sitting awake and they're exhausted at night, but they are also so wired up. They can't sleep and their mind's racing and they feel like they're having a panic attack. That's, that's long COVID. And they're not crazy and it's not anything that they've done that's wrong. And again, a lot of people know about it, but a lot of people don't know about it.
Anisa Khalifa: That's something our health reporter, Jason deBruyn, thinks about a lot. So you've covered COVID, almost since the beginning. And you've seen how our understanding of long COVID has evolved during that time. What do you see as the most important thing for people to remember about this disease?
Jason deBruyn: I would say that validation. If a friend or a family member of yours says I'm suffering from lung COVID, believe that person. Validate those symptoms, do not brush them aside. You know, we know how to treat fatigue, we know how to treat memory loss, we know how to treat brain fog, right? These are things that we know how to treat. But if they aren't recognized or validated, then you can't even get to that first step.
So I think that's probably the biggest thing is to recognize that long COVID is real. They can get through it, they can get better. We are seeing that, you know, this, this football player that I've referenced, I mean, he is doing better. So people are getting better. But it's a process and it takes support. Just like if you break your leg, that's a very visible injury, right? Somebody who's on crutches and has a brace or whatever. That person almost certainly would be helped up the stairs, right, or be allowed to use an elevator.
Anisa Khalifa: As a health reporter do you think this reflects broader attitudes we have as a society towards chronic illnesses and illnesses that you can't see?
Jason deBruyn: Absolutely. I mean, absolutely. We as a society struggle with that to a major degree. And we are struggling with it here as well.
Anisa Khalifa: You can find links to our previous coverage of long COVID with Jason in the show notes.
This episode was produced by me, Anisa Khalifa, and our editor, Jerad Walker. Al Wodarski and Sean Roux provided audio engineering support. The Broadside is a production of North Carolina Public Radio, WUNC. You can email us at broadside@wunc.org. If you enjoyed the show, leave us a rating, a review, or tell a friend to tell a friend! Thanks for listening y'all. We'll be back next week.