Matthew Long-Middleton is a media training manager at KCUR in Kansas City, Missouri. For over 90 days now, he’s felt many of the reported symptoms of the coronavirus, and they don’t seem to be going away. He doesn’t have definitive proof he has COVID, due to testing troubles, and he doesn’t know where he would have picked it up. But having had to travel a lot for his job, he knew he was at risk. Like a lot of people now living with what some are calling “long haul” COVID, figuring out what’s going wrong has been an ongoing project. Long-Middleton is one of a growing number of people who say that this coronavirus could last longer than you think, and affect you more severely than you realize. After all, he once was able to bike across the country. Now he has trouble biking down the block.
On Tuesday’s episode of What Next, I spoke with Long-Middleton about his symptoms, his struggles with figuring out what’s wrong, and how he’ll know when he’s recovered. Our conversation has been edited and condensed for clarity.
Mary Harris: This started at the beginning of March, as coronavirus numbers were surging. You were journeying around the country, visiting one public radio station after another. Then you got back home in Missouri and felt this cough.
Matthew Long-Middleton: This little cough felt like a tickle. But I couldn’t suppress it. It was always two at a time. I chalked it up to allergies, with the change of seasons. But then, on March 11, essentially two weeks to the day I returned from all my travels—that was the day I got really, really sick.
My principal symptoms, to start, were the cough and this incredible chest pain and discomfort. The other weird one I had, and I think still do to a degree, is this cold shiver from the base of my skull that would wash down my entire back. It’s so bizarre to describe. And then there was profound fatigue, muscle aches.
The thing I really didn’t develop in a serious way at all, particularly in those first few weeks, was the shortness of breath. That was challenging because early on, that’s what physicians were looking for, and that would also be the thing that would then, under certain circumstances, get you admitted to a hospital for more intense care.
You’re talking about getting sick in early March. But you’re in Missouri, which is not, like, a COVID hot spot. So I’m kind of curious what happened when you started to think it was COVID and then looked for a test.
I went to an urgent care clinic and told them all my symptoms and explained that I had been traveling. But at that point, you either had to have been exposed to someone with a positive COVID test or you had to have just returned from Wuhan, China. Those were the criteria for a test at the time. But for some reason, after I came back negative for the flu test, they said to go get a COVID test. So I did that. They did the nasal swab test and told me I’d have results in 24 to 48 hours.
The urgent care clinic calls me the next Thursday and says, We have some weird news: Your test came back as an unsatisfactory sample. Well, what does that mean? It means the sample we have isn’t good enough to give you any results. They told me to assume I have it, to stay home, to not go out near people. OK, great. That’s exactly what I’ve been doing. I’ll continue to do that. Thanks. Then on Sunday, I get a call from the central office. And they’re like, Oh, we have great news. You came back negative for COVID. I was like, Wait, I just got a call a few days ago from the urgent care clinic telling me I had an unsatisfactory sample. They said, Private labs have come online. So we sent your sample there to be tested. And I was like, So let me get this straight. You took what was by definition an unsatisfactory sample and sent it to a private lab to be sampled? At this point, my wife was on speakerphone and she’s like, Has any unsatisfactory sample ever come back positive? They said no.
You had a second negative test, weeks after your symptoms had begun. What did your doctor tell you? What’s your relationship like with your physician?
I’ve been disappointed in the care I’ve received.
In a survey of other long-term COVID patients, a quarter of them reported a negative test, just like you. You also have one more reason to believe you have the disease: your mom. She got sick around the same time you did. She’s a nurse practitioner.
She got much more acutely sick than I did. She developed bad shortness of breath. I remember FaceTiming with her and I could see her lips turning a grayish blue. She couldn’t finish a sentence without taking a breath.
I wonder what your conversations with her are like. Is she convinced you have COVID too?
Oh yeah, she’s very certain I have it. And she is unequivocal about it. But she’s also my mom.
I didn’t have shortness of breath, but all the other experiences I did share with my mom. She also had this mercurial kind of experience: I remember one day, she was literally singing, like “I feel so much better.” And then the next day she was back in bed, just absolutely miserable.
What is this disease? You’re describing your mom having one experience and you having another, both similar in some ways, but then quite different in other ways.
My mom is part of the Harvard Medical School Continuing Medical Education program. As she was recovering, she put together this webinar with three other medical professionals, some of whom had tested positive for COVID. I remember one doctor saying, What is the similarity between all of our experiences? That every single one of them is different. I thought that rings so true with what I’ve witnessed and with everything I’ve read about this virus.
How are you now?
Today, right now, is a better day. Yesterday was a really hard day. Not in the sense of, like, I was horribly sick, but I had the ambition to do a very light 30-minute bicycle ride yesterday. Then I played some video games with my brother in Vermont in the morning and by 11 I was like ahhh man. And then I was on the couch the rest of the day. I just couldn’t. I was so profoundly fatigued and weak. That was mentally really challenging because I’d had this string of days where I had been doing things like a 30-minute walk, a 30-minute bicycle ride, a full week of work. I participated in more Zoom meetings. I wasn’t symptom-free, but I was able to do these other things.
I spent all of yesterday just wondering, should I have walked less? Should I have cycled less? Should I have done less work? Was there anything I could have done differently that would have helped prevent this day from happening? Maybe there was. Maybe there wasn’t. I don’t know.
How are you going to know that you’re better? Like when?
It’s a great question. When will I know? So the last three symptoms I’m dealing with are: moderate to profound fatigue, sometimes my minor sore throat or cough comes back, and then there is this buzzing, tingling, vibration sensation. There’s also the sleep disturbance. Once all those symptoms go away, I would say I’m better. The hard thing that relapse question—like if I push too hard, then I feel it again. So I guess I’ll know I’m better when I can do high-intensity interval training and I don’t pay for it later.
I was talking to a neighbor the other day about school and she was like, I think we just need to rip the Band-Aid off and get the kids back in school full time because it is hard to have our kids here. I wonder what you make of that, having gone through what you’ve gone through over the last few months.
I would say I empathize with the feeling. It’s so hard for so many people. But I guess I just keep coming back to: You don’t know how badly it’s going to hurt. You just don’t know. Not only that, there are inherent risks to what that idea is proposing. I understand children’s development is going to be severely affected, our own personal lives have been extremely affected, the well-being of all of our neighbors has been affected. But that analogy isn’t fair. This ain’t ripping off a Band-Aid. You need to make a new calculation, and honestly, it’s a really hard one to make.