My Long Covid Isn’t a Burden on My Wife

And she's here to tell you about it.

Yesterday, NPR published an essay titled “Wrestling with my husband's fear of getting COVID again.” The short version is that the writer’s husband got Long Covid in 2022, which resulted in “scary, lingering symptoms. He said it felt like there was ‘an engine humming in his chest.’ He experienced frightening fits of insomnia. And his personality changed.”

The writer’s husband seems to have recovered, but is terrified of the cumulative dangers of reinfection. He doesn’t want to eat inside restaurants, host dinner parties without asking friends to test for Covid beforehand, or go to the movies. “He is immunocompromised and his doctors warned him that if he got sick again, it may complicate his autoimmune disease,” the writer states. Yet, she’s torn. “I want to keep my husband safe and healthy. But I also want our old life back,” she writes.

To her, that seems to mean that her husband will ignore the risks to his health and life so that she can enjoy the social life they shared before he got sick.

Julia Doubleday

has written brilliantly and beautifully about the NPR op-ed, breaking down how disabled people's exclusion from indoor spaces is a civil rights violation, not an annoyance for their spouses. I also want to counter the NPR narrative, but in a more personal way, so I interviewed my wife about having our lives flipped upside down by Long Covid.

My wife was really nervous to do this interview because she doesn’t want a pat on the back, and she doesn’t have a savior complex, and she was worried that’s how it would come off. So, let me just say, if there’s any fawning over her in the following questions and answers, it’s because 13 years into our relationship, I still have a major crush on her, and I can’t help that my heart-eyed adoration spills into my writing. So that’s just me loving her, not her looking for any kind of praise.

Heather: So this NPR essay, in quick summary, is by a woman who wants to go back to the life she had before her husband got Long Covid.

Stacy: Yeah, I bet he'd like to go back to before he had Long Covid, too. 

Heather: Right. Maybe it would be a good idea to talk about our Covid precautions, the things we've given up since I got Covid — and then Long Covid — in the first wave back in March 2020. We certainly have not eaten inside a restaurant. 

Stacy: Or sitting outside at a restaurant. We've had a very select few people very occasionally over to our back patio. Very small groups. We don't have people inside our house, unless they're walking through the front door to the patio, and even then we ask them to wear masks. 

Heather: And you've worked almost exclusively from home. 

Stacy: I've gone into the office a few times, but they've actually been pretty great at making sure my clients — or anyone who would be coming into my edit suite, really — has tested for Covid. My edit suite is laid out in a way that allows me to be distanced from everyone else, and if I'm out in the bigger office, I do wear a mask. Obviously most people's offices or work lives aren't like that. So I'm definitely privileged in that regard. I have a lot of control over my space. 

Heather: And fun things too. We would have loved to go to see some New York Liberty games, especially the playoffs last year. We would love to have gone to this year's WNBA draft. We loved going to the US Open. We loved going to Mets games. 

Stacy: Our lesbian pastimes. 

Heather: So yes, we have given up a lot of things we love — but never, not one single time, have I felt your frustration directed at me about those sacrifices. You've never, ever asked me to compromise my own health or safety or even peace of mind so we could go do something fun. 

Stacy: That's what I don't get. I think it's totally normal, speaking broadly, to feel frustration that it's not safe to do things that you used to enjoy doing with your partner or with your friends or your family. But my frustration is towards everyone else. I'm frustrated with the CDC. I'm frustrated with politicians and their inconsistent messaging, if they're saying anything at all. I'm frustrated at the people in our lives who refuse to acknowledge the new reality we're all living in, or who refuse to grapple with the danger they're putting themselves and others in because YOLO or whatever. I'm frustrated that our culture has become so politicized and so whittled down to just nonsensical arguments that people get mad if they see you wearing a mask somewhere. 

Heather: Right. 

Stacy: We're constantly being gaslit, constantly being told Covid is over, or not that serious, or there's nothing we can do to curb the spread, or that we can but it's not our responsibility to care about the collective. And that's on a large scale. You and I deal with so many people who guilt trip us, who refuse to understand the precautions we take. We go out of our way to explain why we're choosing to protect ourselves, and we always make an effort to say that we don't expect anyone else to make those choices. People will tell us they get it, that they understand, but then they're constantly disrespecting boundaries, or asking us to do something we've told them six thousand times that we can't do. We are constantly defending ourselves and repairing ourselves.  

Heather: You're getting more and more worked up the more you talk, but it's so clear that your anger is directed outward. You're talking about this like "We are dealing with this, we are in this together, these are our choices, as a couple, and we're standing in them together." 

Stacy: Exactly. Am I mad? Yes, I'm fucking mad. But absolutely not at you! Do I want to go to New York Liberty games? Yes! But — here's the thing. The stuff that I miss like that? It's stuff I did with you. I miss other people, and socializing and stuff sometimes, but most of the stuff I wish we could do is just stuff with you, in a different location. You're my favorite person. You are the best person I know. You're the person I enjoy being around and experiencing life with more than anyone. 

So why would I want to risk you getting sicker so I can get a fucking mimosa at a mediocre restaurant? Or even a great restaurant, I don't give a shit. Why would it be worth having an hour of pretending I'm living in 2019 if the cost is destroying the rest of our lives? Why would I do that? I don't understand. I don't understand the petulance of, like, "But I want to go to a bar with my friends!" Yeah, I love a bar. But also? I don't want you to die, so. Pretty easy decision, really. 

Heather: You are framing this in such a different way than that NPR author was framing it because you're talking about it as: we're a team. We take these precautions, we make these decisions, people get angry at us. We, we, we. Us. And when I hear you say that, it makes me feel so seen and supported, and it also makes me feel like the burden of the sacrifices is less because we're standing underneath it together. And there's never been a doubt in my mind about that. It feels like we've approached this whole thing as a team without even actually having to have a conversation about it. I guess because we were such a good team before, so why would that change? 

Stacy: I guess that's one of the things that confuses me the most about the NPR piece. All these marriage counselors saying they both need to compromise. Like, she needs to compromise by not going maskless into a restaurant every night, and he needs to compromise by… risking his life? She was frustrated and annoyed that he wore a mask for the whole 13-hour flight when they went on vacation. Which, just tangentially, it was already a HUGE compromise for him to even put his life at risk getting on that plane. Let's say he takes that mask off for 30 minutes, for ten minutes — if someone two rows in front of him has Covid, he could very easily get Covid. You know, on a plane, with air being recirculated the entire time. It's not like if you wear a mask for five minutes, you have 24 hours of protection. 

The writer and these so-called marriage counseling professionals are making it seem like the threat of a reinfection — something that could make his Long Covid substantially worse, or potentially even deadly — is not a real risk. It's got this sinister vibe of that 1950s hysterical women kind of talk. He is just being paranoid and unreasonable and hysterical — but no, that's actually, there's medical professionals telling him, "Repeated reinfections could have even worse consequences than the debilitating Long Covid you've already experienced." 

Heather: Yeah, of course relationships take compromise, but this isn't some kind of decision about what toppings to get on your pizza. 

Stacy: I recently saw someone say on Twitter that in relationships, you have boundaries that are lines, and boundaries that are hard walls. Line boundaries are something that might have some wiggle room, something you might have a conversation about, something it wouldn't hurt either person to shift on just a little bit. There's some fluidity there. And then there are hard walls.

Heather: I like that a lot. Like monogamy would be a hard wall for us. We're not going to be like, "I think you should compromise and let me sleep with other people 20% of the time." Because there's no compromise, for us, on monogamy.

Stacy: And that's not a judgment on anyone else or the validity of polyamory or open relationships or anything like that. But for us, yes, monogamy is a hard wall. Taking serious Covid precautions based on science, that's a hard wall. 

Heather: Right. It's not a “compromise” to ask somebody to put their life at risk. 

Stacy: And you do have to wonder how much of this is Covid-specific, right? Like, if a partner needed you to take extra precautions because they had cancer, or got into a terrible accident, and you wrote an article about what an inconvenience that was, people wouldn't stand for it. But when you're talking about Covid, and these post-viral illnesses that have been overlooked and dismissed for who knows how long, when you're talking about Dysautonomia, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, the person who needs the precautions is suddenly stricken with health anxiety. 

Heather: As you're talking about compromise, I'm thinking about how, actually, you and I have made a lot of compromises inside our relationship because of Long Covid — but we've never stood on opposite sides and needed to compromise on Covid safety. Like one of our major struggles is that you are so in tune with me and my brain and my body that you can anticipate my crashes. You can tell almost immediately when I am pushing myself too hard or too far. And it doesn't matter how gently you say that to me, I do not want to hear it. 

Stacy: Yeah, like do I get frustrated when you get annoyed at me for trying to keep you from overdoing it? Of course I do. However, I also understand that you have gone through major physical, emotional, and cognitive changes over the past four years, and that's not just something you get over. It's not like you talk to a therapist three times and it just goes away.

You've obviously done so much research and read so much literature and talked to so many different people in advocacy and people who have been living with various disabilities. You've done everything you can to educate yourself and feel comfortable in your new reality. But sometimes it's just hard. It's just really hard. You want to be able to get on your bike and exercise and go do a full day's worth of chores around the house and do handy projects, like the butch lesbian you are. I just think as a partner to someone who's going through that, I can't fully understand it. You can explain it to me in words, and you're so eloquent, you've written so much — but I'll never know what you're feeling moment to moment, having to navigate that. But the most important thing is that I respect that it's not going to be a straight line to you just being fine with everything that has happened. 

Heather: Man, I love you so much. 

Stacy: I love you too. This is what love is. The NPR article, more than anything else, feels so mean to me. This is not the same as disability at all, but I have a lot of childhood trauma, very, very serious childhood trauma, and it will hit me out of nowhere sometimes. I'll just have a day where I'm suddenly deeply depressed and you never make me feel bad about that. 

Heather: You're touching on something so important to me. That NPR article, and so many of the things written by and about partners of people with Long Covid, they frame it like the person with Long Covid is now simply a burden with nothing left to give. Just a nuisance who makes socializing too difficult. And it took me a minute, but I know that's not true. 

Stacy: Yeah, does this husband not have value to his wife if he can't get brunch with her? 

Heather: I have a completely different body and brain than I had before Covid, and even when I get frustrated at myself — for example, when I have aphasia and I can't find my words — you've never made me feel like I no longer contribute to our relationship or that I'm not a valuable part of your life. There are still ways for us to find great joy together, even if they're not exactly the same as they were before I got sick.

Stacy: You're the most valuable part of my life. 

Heather: Babe! I'm your MVP? 

Stacy: You know you are. 

Heather: When I first got Covid— 

Stacy: I thought you were going to die. I mean, you got it in the very first wave in New York. We're talking like March 2020. People have memory-holed this shit so bad. But just to be clear, because people seem to have fucking forgotten this somehow, March 2020 when you were really sick, all we heard, all day long — and this sounds like I'm exaggerating, it sounds like I'm being hyperbolic, but I'm not — were sirens, ambulance sirens, going down our street to the hospital that's a few blocks away from us. Constant, nonstop.

People were dying in line to get into the hospital. There were ice trucks lined up outside of hospitals for corpses because there wasn't any more room in hospital morgues. Remember when we all applauded the healthcare workers? How hilarious that 99% of the people who were on their porches clapping for healthcare workers at 7:00 PM are now like, "Fuck you, I will absolutely not inconvenience myself by wearing a mask." 

As an adult, I remember a lot of things very vividly and I will never forget how scared I was, and how sick you were. You couldn't even walk from our bed to the bathroom — which is just, there's no stairs or anything; it's literally two doors down the hallway — without almost fainting because you couldn't breathe and your blood oxygen was dipping lower and lower every day. And I know the hospitals aren't like that anymore and whatever, but that's not the point. The point is, I've seen you so sick that you probably were one more blood oxygen dip from being hospitalized. And when doctors are telling me if you get it again, regardless of how the virus is mutated, you could get even sicker, I can't imagine you getting even sicker because I thought you were going to die. So I don't know. I just don't understand. 

Heather: One of the things the NPR writer said is that she wants her husband to express gratitude for her sacrifices. I want you to know, and I think you do, how grateful I am that you have made the sacrifices that you've made — and you're making a face that's like…

Stacy: Don't frame it like that. You're my wife. I would do anything for you, and it's not a sacrifice to keep you safe. I don't want you to make it sound like I'm some kind of saint for simply loving and protecting you. And, you know, it's not like I was able to just roll right into all these changes. I get stressed, I get anxious, I have had a hard time sometimes adjusting, mentally, to everything that has happened. 

Heather: But, to me, that's what makes it so special. No, you aren't a person who necessarily loves things to change from day to day. Throwing wrenches into plans that you have distresses you big time. The fear of the unknown gives you anxiety. The fear of losing someone you love gives you major anxiety. So the fact that you have dealt with all of these things, in the process of us dealing with Long Covid, and that you have continued to come out on the other side of those things being the best partner anybody could ask for, that is what makes it special. Because it wasn't easy, because you've had to work at it. 

I mean, we got married after I got sick. We've been together a million years, and we got married on Zoom, in our living room, sitting down because I couldn't stand up, after I had Long Covid. I don't think anything has ever made me feel like a higher self-worth as a human being than you, the person that I love and admire most in the world, choosing to commit your life to me, even though in my mind my self-worth was really diminished. I don't think that anymore. I've worked through it a lot. But your choice in that timing, it will be one of the things that I treasure the most for the rest of our lives.

Stacy: I never even thought about it like that though. I mean, I thought about how when you first got Covid, I thought you were going to die. I definitely thought about that. I didn't even know what life could possibly be like without you, and I didn't ever want to know. I know life happens and I might one day know what that is, but I don't want to. So I guess I thought about it in the sense of I thought I came very close to losing you and I wanted to make sure I would never lose you in the ways that I could control. 

Heather: You never doubted me for a single second. Long Covid didn’t even have a name when I got it. We didn't know what was wrong with me. 

Stacy: Why would I have thought you were a liar? And that's part of the reason why I sometimes get mad at some people in your life who are continually — not literally calling you a liar to your face, but they show it in other ways. They show in so many ways that they think you're fibbing or exaggerating, whatever New York Times buzzword you want to use besides lying. They do this constantly to you, and it makes me so mad because I'm like, some of these people, they know you. Why would they think that you're making this up? 

Heather: It's pretty weird. It's like: you either think I'm lying or I'm unhinged, or you don't care. It's got to be one of those three things or some combination of them. 

Stacy: That's why I get really mad! Like, why are you calling my wife a liar? For real, though? It really upsets you, especially the people who know you. And it all comes back to them feeling inconvenience. Similar to that NPR writer's husband and that 13-hour flight. He's on a plane with her going on vacation. How does him wearing a mask on a 13-hour flight affect her in any way whatsoever other than him keeping himself healthy? The only explanation I can come up with is that, consciously or subconsciously, she felt embarrassed sitting next to him. No other reason why she should have a fucking problem with that. 

I sound so angry. I just know people in your life who act like this, where they're like, well, I don't understand why you won't come to my party. And I'm like, "Why would we come stand in a tiny apartment in New York City with 30 people piled on top of each other and risk your health?" We are happy for whatever you're celebrating, and we love you, and we want you to have the happiest times — but not at the risk of my wife's actual life. 

Heather: It's especially disheartening with people who claim to be so liberal, so progressive, so leftist. People who preach community care and won't even put on a mask. 

Stacy: Obviously, if you went out to some party or whatever, and then got really sick, those people would feel quite guilty, they'd feel really bad and they'd be very apologetic — but honestly, fuck their apology in that scenario because you've told everyone so many times the reality of your situation, and they have chosen not to hear it and continue to choose not to hear it. So if that happens in the future and then you get some apology, you'll probably accept it because you're very gracious and loving. I will not accept it because I am a bitch and that's someone hurting the person I love most of all, for selfish reasons. So no, I preemptively reject any and all apologies! Like how bad have people beaten you down? You literally just said to me, "I'm so grateful for you that you don't want to kill me."

Heather: Hahaha! What I'm saying is that we have had to make a lot of hard decisions and sacrifices, and I'm grateful that you have never positioned us as being on opposite sides of the table as that has happened. You have always positioned yourself as standing literally right beside me on my team, shouldering that weight with me. 

Stacy: Yeah, ‘cause that's marriage. 

Heather: I just want people to know — I mean, there's this NPR story, there's so many stories of people losing partners, family, friends because of Long Covid. I wanted to talk to you and publish this interview to show that's not the whole picture, that's not everyone's reality. 

Stacy: I guess I would say to people who have a loved one who's dealing with Long Covid, if you've been struggling with understanding or believing them, if you don't understand why they're so scared or whatever, just try to think about what it would be like to not only become disabled, but to be unbelieved about it, in every level of society, constantly. Think about how terrifying that would be, along with all the pain of the actual disorders Long Covid causes.

And then just if you need to try to imagine it, like I was saying earlier, imagine if they had any kind of well-known serious cancer, would you be acting the same way? Or if they had any kind of a major injury, would you still be acting the same way? I know Covid is still relatively quite new and it is hard to understand — but, actually no. It is really not that hard to understand. You're just choosing to not understand. Believe the people you love. It's a gift to love someone so much. It's a gift to have someone you want to keep safe. 

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