Throughout the pandemic and now, you may have seen a bevy of articles or social media posts written about lessons learned from the past few years — whether it was something trivial like how to make bread or a more meaningful takeaways (like how to care for the safety of loved ones).
It’s a common habit we humans have: Creating a narrative around a global pandemic that has caused so much distress helps us make sense of it.
“The way that we find purpose in experiences, and especially hard experiences, is to spin a narrative and believe that there’s a lesson,” says Kim Gorgens, PhD, Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver. “That meaning-making piece of human experience is where there’s so much richness. The trap is, interestingly, assuming that everyone takes away a lesson or you’re supposed to.”
For members of our immunocompromised community, the past few years may have been a time of extreme anxiety and isolation — and perhaps you feel like you don’t have a lesson that you learned from that. We talked to immunocompromised individuals about their experiences and their thoughts on this topic, and here’s what they had to say.
We already knew some of the lessons
Up until the pandemic, the general population gave little thought to wearing masks. Suddenly, millions of people had to quickly learn terms like “social distancing,” “quarantine,” and even “immunocompromised” — things they may have heard before, but perhaps didn’t truly understand.
“I remember wearing a mask on an airplane as I was going to a conference in December 2019, and I had people looking at me like, ‘What is wrong with him?’” says Jed Finley, who was diagnosed with ankylosing spondylitis as a tween and is part of the COVID-19 Patient Leadership Council.
As guidelines shifted, many realized that even if they were immunocompetent themselves, they needed to make adjustments for those more vulnerable in their communities. And if they were considerate and responsible, they hopefully did so.
“It brought up a topic that I think we all had concerns about, but it really put it on the front pages,” says Finley. “It took a worldwide pandemic to open the eyes of the rest of society.”
In fact, many of the things that were proposed were “things transplant patients are told all the time,” says Roxanne Watson, a heart transplant recipient who is also part of the council. “After I got my heart, I wore a mask for about six months — every day, everywhere. That wasn’t unnatural to me, but it was weird to see everyone doing it during the pandemic.”
Once the surprise of seeing so much of the general population masking up and taking precautions set in, though, Watson says she was grateful for the lessons learned about hygiene on a broader scale.
“The best thing is just the sanitary part, people became more sensitized to sanitary habits,” says Watson. “It’s always good to have the general public learn more.”
Of course, for immunocompetent individuals, this shed light on the millions of people across the country (and even more around the world) who have weakened immune systems.
Experts estimated that nearly 3 percent of Americans meet a strict definition of having a weakened immune system, per a 2016 research letter from the journal JAMA. However, many more with underlying conditions could be affected if they contract COVID-19, per the Kaiser Family Foundation.
We hope some lessons aren’t unlearned
“One value that the pandemic has granted to the larger population is that they understand better what the experiences of persons with any manner of chronic illnesses or immunocompromised circumstances experience on a daily basis,” says Dr. Gorgens.
The immunocompromised community has long been privy to the necessities of looking out for themselves, coping with loneliness when self-isolating, and creating boundaries when it’s in their best interest.
While we can hope that the pandemic has forever opened many people’s eyes to the importance of protecting those most vulnerable in our communities, it’s easy for some to resort to old ways.
“For a little while, we were all in this together,” says Finley. “Shortly after that, many people said, ‘Okay, we’re good.’ It was kind of like they were only concerned about themselves — but when it came to people who were still at high risk of getting sick, it didn’t really matter anymore.”
At Finley’s school where he works as a teacher, he and one other teacher are still wearing masks. (Schools across the United States have now dropped mask mandates, except for public schools in Hawaii at the time of publication.)
“One student asked me, ‘Why are you still wearing a mask?’” says Finley. “When I said I don’t want to spread germs and I don’t want to breathe in other people’s germs, he said, ‘You’re going to get sick whether you wear a mask or not.’”
Meanwhile, Watson hopes basic hygiene lessons that have been picked up during the pandemic won’t be forgotten just because certain mandates have been dropped.
“I don’t want people to turn around so quickly,” says Watson. “I can see them not wanting the masks and all that, but I think we should stay vigilant on sanitary things we’ve learned along the way — the handwashing, especially — and not go, because the mandates are over, everything is over. Everything is not over.”
Of course, one of the most important lessons many have learned throughout the pandemic is how effective vaccines can be in warding off severe disease, which Watson hopes will stick.
“People need to continue to vaccinate,” says Waston. “I’ll be getting my fourth shot, my second booster, soon.”
Some lessons are small, others matter most
Learning how to, say, best organize the pantry during isolation may not be the most meaningful of lessons. But for those who did walk away from the pandemic with a better understanding of what it means to protect their neighbors, essential workers, and loved ones, they will have gotten at least a glimpse into an immunocompromised person’s life.
“Some of it is trite, but some of it really is heartfelt and relatively wise, written by people outside of the immunocompromised community, about things that the immunocompromised know to be their truth every day,” says Dr. Gorgens.
As for other lessons learned? Finley says he did find out what steps were most important to take to protect himself from COVID-19, as we all did throughout the pandemic. At the beginning of the pandemic, he wiped down groceries and showered immediately upon returning home — and later realized it wasn’t all necessary.
However, he doesn’t believe there was a larger takeaway or enlightening moment for him. “It was an educational moment, but in the end, I don’t feel like there was much of a lesson that was learned,” says Finley.
And that’s perfectly okay.
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Covid Still Threatens Millions of Americans. Why Are We So Eager to Move On? Kaiser Family Foundation. February 22, 2022. https://khn.org/news/article/covid-immunocompromised-safety-guidance/.
Harpaz R, et al. Prevalence of Immunosuppression Among US Adults, 2013. JAMA. December 20, 2016. doi: https://doi.org/10.1001/jama.2016.16477.
Interview with Kim Gorgens, PhD, Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver.