Patient Spotlight: My doctor kept insisting it wasn’t COVID

Body Type contributor Delia Rogers interviewed Erin Lopez (she/her), an International Relations graduate student living in Sheffield, England who contracted COVID in February of 2020 while teaching in Japan.

Delia Rogers: How did you first contract COVID, and what did your initial illness looked like?

Erin Lopez: I was living in Japan. And obviously, that's a very strange beginning to the story because I actually contracted it in February, like early February. I was living in Niigata Prefecture at the time, and I decided to go to the famous Snow Festival they have every year, this beautiful thing with all these ice and snow sculptures. And there were cases of COVID that popped up. But of course, naively, I thought it was fine—I'll wear my mask when I'm in public spaces, and I'm not gonna stress about it, I’ll wash my hands, I’ll be fine. We didn't know what it was like, it was still kind of new, so I didn't really understand the gravity of what was going to go on. 

Fast forward to getting on the plane, I started feeling a little weird. But I got home and was feeling fine. Then I woke up the next morning and I took my temperature and it was 104 degrees. I called my doctor and (since I lived in a small town) I was able to get in to see him very quickly. And he looks at me and he's like, okay, you've got a sore throat, you’ve got a couple things. But you're not coughing, so I'm not worried about it being COVID. After a few days, I'm not feeling any better—I'm actually feeling much worse. My body is very, very achy. At this point, I just felt really, really, really tired. So I called him and said I'm still not feeling better. At this point, they did order a COVID test. But by that time, it had already been almost a week and a half since I first reported my symptoms.

My test was positive for rhinovirus, which is really weird. I think there's actually some research that might suggest that if you have a rhinovirus infection it could potentially displace the COVID infection—which is an interesting hypothesis to me because what I had felt very much like a COVID infection, but I did not have it as badly as some people. I never had respiratory issues. Eventually it kind of evolved into this gurgling underneath my ribs. It felt like my chest was very tight, but I never had any cough, just some fluid around my lungs.

I had lots of X-rays. After two weeks, I went back to work and I still wasn't feeling well. So I went home and it just kind of devolved. My body kept getting stranger and stranger symptoms as time went on. My hands started developing Raynaud’s and were blue. At one point, my lips went blue, but my oxygen saturation was fine. My heart rate would just jump up and down for no reason. I couldn't walk more than a mile. If I walked for more than 10 minutes, I was exhausted. I lost control of my legs at one point, where I went to stand up and I couldn't crawl to get to the bathroom because I had no control over my legs. It was very strange, I just couldn't figure it out. My doctor sent me to lots of different specialists—he kept insisting that it wasn’t COVID, and I said, look, all signs are pointing to other people having the same kinds of experiences that I'm having. And he just kind of refused. 

And of course, I'm in Japan, it's in my second language. So I guess the initial infection was not bad—after two weeks, I did start to feel better and it seemed like it was fine. I started exercising right after I started feeling even just the littlest bit better because I was really excited. I was formerly a fitness instructor and I worked out anywhere between four to six days a week, I taught yoga to schools, I hiked a lot. So to get that sick was really strange.

Then, slowly, things have gotten somewhat better. I still have Raynaud’s, I still have migraines pretty regularly. It made my periods pretty horrific. For a while I was exhausted. The fatigue was probably the worst—I was diagnosed with chronic fatigue syndrome while I was living in Japan. 

DR: When did you start like first hearing about Long Haulers and Long COVID?

EL: I think the first person I read about would probably be Fiona [Lowenstein, founder of Body Politic]. When I read about them, I was like, somebody else! Somebody else who actually knows what this is! I'm not alone in that! And then I looked on Instagram and found a whole bunch of people, it was amazing. For the first time in a while I was like, wow, maybe I'm not alone. And actually, some of my friends that lived near me in Japan said, Erin, do you think that you're a long hauler? And I was like, what do you mean? So I guess right when Fiona came out with their story was the first time I'd really heard of anybody else talking about it, which was so nice. 

Artwork by Delia Rogers

DR: Do you feel like you were listened to by doctors when you started talking about Long COVID?

EL: Yes and no. My doctor sent me to so many doctors and I think that was despite the fact that he himself was just like, look, it's anxiety, you're having anxiety about the situation, and maybe you're depressed. And at one point he suggested that I take antidepressants, but I was like, no, I'm not depressed. I was terrified. There’s a difference. I think part of the problem was that I had had a negative test. In the beginning, the tests that we received were faulty tests. The tests that we had in the clinic had an efficacy rate of 30%, or less than 30%. And there was a really, really sweet doctor at the hospital who was like, look, I know that you're actually in pain. And I know there's something wrong with you, I can't for the life of you tell you what it is, but I know that something's going on. I've had a couple doctors who were like, I know there's something going on with you, I don't know how I can help you. 

DR: What are some things you want more people to know about Long COVID? And what do you think people can do if they want to be a supporter of people with Long COVID or advocate for Long COVID patients?

EL: I think what I'd like people to know is that it's real. It's real. And it's something that will change your life. And, yes, you can get COVID. And yes, you can survive it. But that doesn't necessarily mean that you're going to just be unscathed. And I think that there needs to be some recognition of what that means. If you are one of the lucky people who is unscathed—yay, that's amazing. But it doesn't mean that you should just stop doing the right thing. So I think, right now, everybody's getting very tired of wearing a mask and social distancing, and not being able to live life normally. But I think it's important that we continue to do those kinds of things. Because it's a collective effort of protecting everybody, not just your grandma. It's about protecting kids. It's about protecting your parents. It's about protecting yourself. It's about protecting your friends.

And there are now hundreds of thousands of people who are disabled. I mean, I've worked with university services to obtain some help because of chronic fatigue, and the lady said, “this is a medium level disability.” And I was like, I'm disabled. I mean, I was a fitness instructor, and now I'm disabled. And that's a big difference. And I think that being conscientious of that is really important, because it's not just about the experience of people who are going to be gaining disabilities, it's about the people who already have disabilities. It's about making sure that we're listening, we're actually truly listening to people when they say that they're having problems, because I think so often we dismiss people when they're in pain, or because of sort of internalized ableism, think “ oh you'll get better, it's gonna be fine.” I had that conversation with many of my loved ones, where they're like, “oh, you're not better yet?” I'm not better. I call it chronic. Ongoing. So I want people to be aware that when you take these actions, you could change your life, you could change someone else's life.

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Erin Lopez (she/her) is an International Relations graduate student living in Sheffield, England.

Delia Rogers is a fourth year undergraduate student at The New School studying Global Studies with a minor in Race & Ethnicity Studies and Gender Studies. They are interested in the ways in which race, class, and gender intersect with wellness.