Long Covid isolation won’t break my marriage — in fact, it’s made it stronger
The other night, after tucking in our child, my partner and I stretched out on our bed — where I spend the vast majority of my time — talking about how we’ve been forced to live since 2020.
H yawned, his curly black hair spread out over his pillow. We were both already exhausted, me from Long Covid and H from working and being the family caregiver, but we are only able to have heavy conversations like this late at night. Hearing us talk about the pandemic, and what we’ve lost, is too stressful for our school-aged child.
Lately, mulling the weight of protecting one’s health is a common conversation for couples dealing with Long Covid. The impetus: In early March, NPR ran an essay by the spouse of an immunocompromised person (who’d recovered from Long Covid) complaining about how Covid-19 precautions play out in — and strain — her marriage.
The essay, published during Long Covid Awareness Month, infuriated many in the disability, Long Covid and Covid-cautious communities. Like others with Long Covid, I found the writer’s prioritization of her desires over her husband’s life deeply offensive. Is this not giving license to people who’ve “moved on” to gaslight, abandon and harm their relatives with Long Covid?
The essay made me worry about others with Long Covid who lack caregivers who protect them, because I know how essential that care is to surviving this illness. I know this because I exist on a tiny island unto itself — population three: H, our child and me — amidst the howling, unforgiving storm from hell that is pandemic-era 2024 in a world deludedly convinced it’s 2019 again. And there is no way our island is going under.
“It’s an asymmetrical situation,” H said of the essayist’s relationship, going on a mini-rant against the piece’s neoliberal emphasis on individualism. “You and I are on the same page, and we’re on the same page because we’ve been through even more difficult situations together before. This is nothing.”
By the time H and I had our whispered conversation late that night, we realized we hadn’t talked about our Covid-19 precautions, or our feelings about them, in years (a result of constantly being in survival mode). When we finally did, it helped rewrite my internal narrative about our lives in the continuing pandemic — and reminded me that we’ll continue to endure precisely because our precautions are teamwork.
When I tell people who don’t know us well about our lifestyle, I describe it as “how everyone lived in April 2020”: We don’t go inside anywhere except for urgent medical appointments, and wear high-quality masks or respirators when we do. We have managed to work from home the whole pandemic (with great effort). Our child homeschools. Every time we open our apartment door for H to take out the trash or get the mail, we turn on our HEPA air filter for the next few hours, since living in a building with others is our main risk factor — and one we cannot change.
We have no idea when it’ll be safe for us to fly again, despite our families living in other countries. Living this way has become second nature by now. But we are very isolated.
Getting reinfected a year into Long Covid, when I became permanently much sicker, made the consequences of those risks even clearer to all of us. I am absolutely terrified of what another infection would do to me.
Constantly preoccupied about my ill and disabled body, I’ve often felt subconsciously guilty that my family has to live on this island with me — as if they keep masking and isolating only to protect me. My sense of culpability is infinitely compounded by my disabilities requiring H to do all of the cooking and housework to keep our family afloat, all while he works a stressful job with long hours.
But as we spoke, in our family language of Spanish, H said he was certain I’d care for and protect him if he was the sick one. Of course I would. This is implicit in our relationship.
And it dawned on me that, by clinging to guilt, my subconscious had been tricking me. In truth, for the pandemic’s first ten months, I assumedall our family’s risks to protect my asthmatic partner — doing grocery shopping and anything else indoors. Until I became really ill.
Throughout the whole pandemic, shielding myself from Covid-19 has always been intertwined with protecting my whole family. As it is for H.
He’s had to fight an uphill battle for remote work accommodation as my caregiver; human rights legislation covers this in our Canadian province, but H has had to retain legal help to make his employer comply, which makes us feel all the more forsaken. H’s ability to work remotely safeguards all three of us: If he went in person and became too sick to work, our family would sink.
Wearing his favorite black sweatsuit (which we three jokingly call his “uniform”), H explained that our relationship of two decades has instilled him with interconnectedness and responsibility. “We want to keep supporting each other,” he said. “The most important thing is that we’re together and can continue to be together.”
If the pandemic continued our whole lives, I asked, would the inability to fly abroad, eat in a restaurant or go see a play in a theater bother him? (H is an artist and once was part of a vibrant cultural scene in Toronto; I am an almost entirely housebound introvert and barely think about activities verboten to us anymore.) H’s answer was instant: “I don’t care.”
What is an enormous headache for both of us, however, is dealing with what H calls “social friction” from people disrespectful of our precautions. They lack empathy, H said of people who disregard our need for safeguards: the man who surreptitiously followed our child and a friend to photograph them masked outdoors, colleagues trying to convince him in-person meetings are superior to virtual, friends asking every year when our kid is going back to school, loved ones who don’t mask.
For H, the swiftness and totality with which society abandoned people like us was unsurprising. It did upset him early on, though, especially when some loved ones clearly weren’t happy about us reminding them the pandemic still raged on. But — now concentrated on how to live with joy on our island — we’ve both run out of energy for anger.
As a result, outliers who continue practicing community protection feel like rare, resistant extensions of the care within our family; our building’s concierge witnessed me sobbing and nearly fainting after reinfection in 2022, and though masks are no longer required, she’s never stopped wearing one. (Like H, she is Afro-Caribbean, and from reporting on Long Covid, I’m keenly aware of how the disproportionate impact of the illness on marginalized communities has led to more consciousness about its risks in communities of color than among white people.)
I exist on a tiny island unto itself — population three: H, our child and me — amidst the howling, unforgiving storm from hell that is pandemic-era 2024 in a world deludedly convinced it’s 2019 again. And there is no way our island is going under.
My family’s present reality is an upside-down world that impels us to appreciate essential, intimate details more deeply: The three of us piled onto the couch to cuddle and make up jokes. Time together after our child’s bedtime with H and I talking about what we’ve both been reading. Being in nature in an urban forest on one of the few wheelchair-accessible trails in Toronto. Playing Scrabble or watching Studio Ghibli movies on the weekends with our child.
In reality, our kid’s long-term well-being weighs heavier on my mind than my own. Homeschooling is protective, but are there genetic components of Long Covid putting them at higher risk? Although H and I worry our child is missing out, saving them from debilitating illness -and me from dying — is most important. As parents, we agree that our kid is going to be so well-prepared for life because of the lessons of hardship and community care they are living through.
Now, fighting for disability justice is a family activity. Soon after becoming physically disabled by Long Covid, I took legal action when a hospital refused me accommodations — such as providers wearing N95 masks. Others questioned why I pushed so hard. But not my husband, who’s endured discrimination and dehumanization his whole life as a person of color. “My own experiences confronting injustice prepared me to support you in your stand against disability injustices,” he told me in our recent late-night conversation.
On our storm-battered island, the trauma and stress of the past four years have not driven H and me apart. Instead, life with Long Covid has achieved something much more profound: my partner and I have been forged together, intertwined in care and protection and tenderness and devotion. This has saved my life, over and over again. I cannot think of a better moral legacy for our child.
Lygia Navarro is an award-winning disabled journalist working in narrative audio and print. She has reported from across Latin America, North America and Europe, and is an editor with palabra, the multimedia outlet of the National Association of Hispanic Journalists.
This story was originally published at The Sick Times, an independent news site chronicling the Long Covid crisis. Sign up for our weekly newsletter here and donate here to support our original reporting.
