January 24, 2023
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Photography by Eldad Carin/Stocky United
As public concern over COVID-19 wanes, many people who are immunocompromised are feeling left behind. Here are six tips for caring for your body and your mind during this time.
If you step outside, it’d be easy to believe the COVID-19 pandemic is over. People are back to gathering and traveling, and you’ll see far fewer masks than you might have a year ago.
COVID fatigue is palpable, and it seems clear that the world is moving on — even if the virus hasn’t.
For those of us who are immunocompromised, the question of how to cope when the world seems to have moved on from COVID-19 is really a question of how to cope when it feels like the world is no longer interested in keeping us safe or including us. It’s a question of mitigating risk and protecting ourselves from the dangers of social isolation as much as it is about managing our emotions and feelings of hurt, frustration, and fear of missing out.
In addition to concerns for my own safety, I find myself stressing over the resilience of our hospitals and the health of our children. A recent spike in COVID-19, respiratory syncytial virus (RSV), and influenza has created a shortage of medications and an untenable strain on our healthcare system.
It is overwhelmingly distressing to know that we are not taking advantage of all the tools that are available to us to help tame this situation.
The good news is that it’s no longer 2020. We now know that masking is effective. We have COVID-19 and influenza vaccines, antiviral therapies, personal protective equipment (PPE), and knowledge.
But 2020 was not without its charms. In 2020, I could let myself believe that the pandemic would be over in a matter of months and that, in the meantime, we were all in this together.
To me, 2020 felt like the “crisis-tunity” that would highlight the need for long-term solutions that address inclusion and accommodation for people with a range of limitations and abilities.
Rather than a time-limited crisis, it’s becoming clear that we must learn to live with COVID-19. But learning to live with it is not the same for everyone. Instead of the improved “return to normal” we hoped for, some of the immunocompromised among us feel more cut off than ever.
If that’s you, know that you are not alone. Here are my top tips for managing this tricky time.
A consequence of perfecting my anxiety over the past couple of years is that my perception of how much I’m at risk for COVID exposure isn’t always accurate.
I almost cried from fear the first time I was in an indoor public space after mask mandates had been lifted. I was at the hair salon and had to remind myself that, while there were people without masks, the space wasn’t crowded, the ceilings were high, and the fit and quality of my mask were optimal.
Not everyone would be comfortable in such an environment, but I had previously decided (at a time when I wasn’t in an emotional state) that good hair is worth a little withdrawal from my risk bucket. Plus, the steps I took to protect myself felt reasonable.
Recently, my husband and I were the only two people wearing masks at a wedding. As someone who uses a rollator, I’m used to feeling like all eyes are on me. But at this particular event, I felt more conspicuous about my mask than I did about my mobility aid.
Wearing a mask can feel like a political statement. Masking can even invite criticism. We’re suddenly dealing with the kind of pressure to conform that we thought we’d left behind in grade school.
When you wear a mask, you’re making it easier for others who are nervous about how they’ll be perceived to mask up, too.
When nobody else is masking, it can undermine our own judgment and make us wonder if we’re overreacting. It takes courage to be non-conformist.
Regularly opting out of gatherings, however, brings with it the risk of loneliness and social isolation, which can have serious negative side effects.
I try hard to remember that even though we are no longer required to wear masks, most people are respectful of my decision to protect myself and others. And when you wear a mask, you’re making it easier for others who are nervous about how they’ll be perceived to mask up, too.
I’m not trying to upsell anymore lockdowns. I’m relieved that businesses have opened up, that kids are in school, and that my husband is no longer working from home.
But it’s tempting to feel misunderstood, left out, and sometimes downright affronted when a friend or colleague asks me to participate in what, for me, is a risky unmasked activity.
It’s exhausting repeatedly explaining my particular health issues. And having to ask others to implement safety measures for my benefit can spark those all-too-familiar feelings of being a burden. It’s also a giant bummer to have to say no to invitations when everyone else is having fun.
I understand re-entry excitement. No one is intentionally trying to exclude me, and simply leaving me off the guest list would be just as upsetting. As the person with the limitations, it’s often up to me to suggest alternate plans, but it’s always worth the effort.
Figure out when and where you feel safe and with whom. For example, my nieces and nephews are regularly dealing with runny noses and coughs, so we limit our encounters to activities we can do outdoors when they’re feeling well. This fall, we spent time together apple picking, getting lost in a corn maze, and exploring a haunted pumpkin exhibit.
None of these activities felt like a sacrifice — and the kids had a lot more fun than if we’d just gotten together for dinner.
It can be frustrating to see vulnerable people acting against their own best interests. Knowing what’s good for us isn’t always good enough.
I can talk myself into pumpkin pie for breakfast just as easily as I can talk myself out of a workout, even though the better part of me knows that sugar isn’t helping my health and that if I don’t move it, I will lose it.
Acknowledging human nature means accepting that we can’t control what others do. Better to focus on our own actions instead.
Expecting others to deny their own instant gratification to protect their personal health is a big ask. What’s even more unrealistic is to expect people to put aside their own interests to protect the health of strangers.
Acknowledging human nature means accepting that we can’t control what others do. Better to focus on our own actions instead.
I can find myself getting pretty riled up when the conversation turns to COVID-19. Fixating on a distressing situation only increases my anxiety.
Like politics and religion, perhaps the virus should be added to the list of conversation killers we need to avoid. Stay informed through trustworthy news outlets and try to limit doomscrolling.
Remember that even the people who appear to be the most reckless are also trying to mitigate challenging times.
Practice radical empathy.
Rates of depression and anxiety are up everywhere. We’ve all suffered losses, so we need to believe most people are doing their best.
Managing COVID-19 anxiety is about coping with uncertainty. Whether it’s therapy or therapeutic screaming, apply the same skills for dealing with uncertainty that so many of us with a chronic condition have already learned to employ.
These days I am leaning heavily on one of my favorite mantras: It won’t always be this way.
Medically reviewed on January 24, 2023
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