In 2022, while I was 7 months pregnant, my husband and I got COVID. While it was a mild case for me, he had 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 — my normally upbeat husband became uncharacteristically depressed.
After a few months, his symptoms went away, but his fears of getting COVID didn't. He is immunocompromised and his doctors warned him that if he got sick again, it may complicate his autoimmune disease. Plus, he didn't want to repeat his traumatic ordeal, especially with a baby on the way.
There are more reasons to be anxious. State and national measures to prevent COVID are falling away, like most recently, the U.S. Centers for Disease Control and Prevention's decision to end its 5-day isolation guidance. And the disease is still very much a threat. Yes, vaccines and boosters can protect against severe illness, but vulnerable people like my husband are still at high risk. To top it off, there is a lot we don't know about the coronavirus. Emerging evidence suggests that the neurological symptoms of COVID can persist years after an infection.
So while the rest of the world seems to have moved on from the pandemic, in our house, it is still 2020. We wear masks when we go into public indoor spaces. We don't eat inside restaurants. We don't go to movies. We have people take COVID tests before they enter our house. All this leaves me feeling torn between two emotions. I want to keep my husband safe and healthy. But I also want our old life back.
'A family problem'
It feels selfish and trivial to say that amid my husband's plight. He is terrified that if he gets COVID again, it will be as harrowing as the first time. And it could trigger a flare up of his chronic illness.
But my feelings as his spouse are valid too, says James C. Jackson, a neuropsychologist at Vanderbilt University and author of Clearing the Fog: From Surviving to Thriving with Long COVID, A Practical Guide.
There's this sentiment that if spouses of those who have experienced long COVID complain, they're "missing the real victim," says Jackson. "But that's problematic from so many standpoints. For one, it fails to recognize that long COVID is a family problem."
Jackson has seen how one partner's experience with a traumatic bout of COVID can affect the other partner firsthand. Every other week, Jackson meets with a support group for family members of people who were critically ill with COVID. Many of the participants are women who "are having to negotiate their husbands' fears of socializing, traveling or even going to the doctor," he says.
As a result, the women tell Jackson that "we used to live this really full life, but fear of going out has truncated our lives so much." I can relate to that. My husband and I used to host big parties, go to concerts, travel on a whim — and now we can't do those things without seriously considering our risk of getting COVID. I mourn the life we used to have. And I know he does too.
Compromising on risk
Jackson says the main problem area he sees with couples in this situation is their individual assessment of risk.
That's actually been one of the biggest points of contention between me and my husband. It's been hard to agree on a set of responsible COVID protections for our household. I don't think it would be terrible, for example, to eat inside a restaurant every once in a while. But he says there's still a possibility we may bring COVID home from our outing, and that scares him. It's a fair concern.
In these situations, Jackson says compromise is key. The best outcomes in relationships are when partners "with polar extremes of safety move toward the other in a way that is a little bit uncomfortable for them," says Jackson. For me, that might mean being OK with dining al fresco most of the time. For him, that might mean acquiescing to eating indoors sometimes, maybe during less busy times of the day.
"I would call that a good outcome if a couple finds a way to accept some differences and adapt to a new normal," he says.
Unpacking anxiety
I told Jackson that I want to be more supportive and empathetic to my husband's needs. But sometimes it is tricky to parse out what is a valid health concern and what might be anxiety.
The reality is that if he gets COVID again, he could get really sick. So some of our efforts to protect our household from the coronavirus are warranted. But there are moments when his measures are unnecessary — for example, when he wears a mask outdoors and no one is around. When I bring it up, he gets defensive.
"That's a hard conversation to have with long COVID patients. Many of them feel like they've been gaslit in the medical community and have had to defend themselves in the context of people not believing that long COVID is real," says Jackson.
So approach this topic with care. You don't want to invalidate your partner's emotions or tell them how to feel, says Ranak Trivedi, a clinical health psychologist and a health services researcher at Stanford who studies the relationship between family caregivers and patients with chronic illnesses. Saying things like "you're making a big deal out of this," for example, is not useful.
Instead, make sure that it's "science that is contributing to the beliefs he's having" around COVID precautions, says Jackson, and not other emotions like depression, anxiety or anger that may be affecting his quality of life.
I told Jackson that's not an easy thing to communicate — and he agrees. "Sometimes people have a hard time considering something when a spouse brings it up," he says, because it may sound like lecturing or nagging or come with emotional baggage from the relationship.
That's where a therapist or a couple's counselor could help, especially one who has experience working with patients who have had long COVID or chronic illness and understands the science and the high stakes. They may be able to help my husband "step back, be reflective and say, 'Maybe my anxiety is getting tangled up in this,' " says Jackson.
Keep communicating
Sometimes I feel like I'm at an impasse with my husband on this topic, so I don't bother revisiting our restrictive COVID precautions. But Laura Murray, a clinical psychologist and a senior scientist at Johns Hopkins University who specializes in mental and behavioral problems, says "always keep trying to communicate."
"If one way doesn't work, try another way," she says. "It could be writing a very heartfelt letter. You might say: I love you more than anything. I want our family to do normal things. And I'm worried about you, worried that your life has become so much about avoiding COVID."
Don't forget to ask your partner how they feel too, says Murray. "Is this the life that he wants? Does he foresee an end to this? Or is this something he would like help with?" That may make it easier to segue into a more productive conversation about solutions and compromise.
A little gratitude goes a long way
Instead of narrowing in on what's not working in your relationship regarding this matter, focus on what is, says Trivedi. "We do have strong scientific evidence from couples' work that to get people on the same page, you need to have empathy and gratitude for each other."
For my husband, that might mean him telling me something as simple as "I thank you for taking all those precautions for me. I know you're doing it to take care of my needs and I really appreciate that," says Trivedi.
And for me, that might mean thanking my husband for overcoming some of his COVID fears so we could go on vacation with our son.
In January, we flew halfway across the world to visit family in Dubai. At first, I thought that the stringent COVID precautions he was taking to protect himself on the airplane were over the top. In addition to wearing an N95 mask for 13 straight hours, he kept a personal air purifier at his seat at all times. But now I can see those actions for what they are. He was doing everything he could to make the trip work. In his way, he wanted to see me happy.
The digital story was edited by Meghan Keane, Carmel Wroth, Audrey Nguyen and Beck Harlan. The visual editor is Beck Harlan. We'd love to hear from you. Leave us a voicemail at 202-216-9823, or email us at LifeKit@npr.org.
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