What Not To Say To Immunocompromised People Right Now

As COVID mask mandates lift, many people who are immunocompromised are still fighting for their lives.

As the omicron wave continues to recede and COVID restrictions ease, many people are celebrating. To them, the end of mask mandates feels welcome, overdue and a harbinger of better times ahead.

For others ― including the doctors and public health experts who’ve expressed concerns that health officials are lifting restrictions several months too early ― the changes are unsettling. For many of the millions of Americans who are immunocompromised (or caring for someone who is) and those who are more vulnerable to COVID risks, this is a moment of abject fear — one that comes after two years of feeling left out of pandemic messaging and public health measures.

“These changes have created a lot of confusion and a lot of worry,” said Dr. Gary Lyman, a cancer doctor and researcher with UW Medicine and the Fred Hutchinson Cancer Research Center, who has been studying the impact the pandemic has had on cancer patients and cancer care. “I’m seeing patients who are feeling what I can only describe as despair.”

Experts who work with immunocompromised people say that if you are at a lower risk for severe COVID, it’s on you to consider how your words and actions affect the millions of others whose lives depend on mitigating that risk. Here are some manners and best practices to keep in mind as the world moves forward in the pandemic.

1. Don’t ask why someone is wearing a mask.

First, it’s important to keep in mind that the new Centers for Disease Control mask guidelines do not say that people can drop masks altogether.

If you’re in an area with low community levels of COVID (and here’s how you can find out) you should wear a mask based on your personal preference and personal risk, the agency says. If you are in an area with medium levels, you should mask up if you’re immunocompromised or live with someone at high risk of severe illness. And if you’re in an area with high community levels, everyone should be masking up. All of us should be ready to pivot as needed, health officials say.

But if you’re in an area with low levels of COVID and you see someone masking, you should not assume they’re doing so because they’re making a statement or virtue signaling. Immune issues are often invisible to others, and it’s no one’s responsibility to share their health details with anyone else.

“I would ask the population to not politicize people wearing masks ... we don’t know what people are burdened with,” said Steven Tovian, a clinical professor in psychiatry and behavioral sciences with the Feinberg School of Medicine at Northwestern University. “They may need to wear a mask and they have the right to do that. They’re not making a political statement. They’re trying to save their lives.”

2. Don’t say COVID isn’t a serious risk anymore.

Yes, omicron was generally “milder” and is waning. But that doesn’t stop COVID from posing a significant risk to those with weakened immune systems. (We also don’t know much about long COVID effects following an infection, regardless of your health or vaccination status.)

Health officials now say that many immunocompromised adults need three shots to be considered fully vaccinated, and a fourth to be considered boosted. Even then, there are questions about how much protection they really have.

“Many of the patients I’ve interacted with question: Are we rushing this too quickly? Will there be another surge as all of these mandates and protections are put aside?” Lyman said. “All of this fear and sense of abandonment among those who are the most vulnerable is very real.”

Aim for empathy, even through our collective pandemic fatigue. Ranak Trivedi, a clinical health psychologist with Stanford University and the U.S. Department of Veterans Affairs, urged people who are not immunocompromised to try and remember how uncertain everything felt early on in 2020. That’s still the emotional reality for many today.

“There were no vaccinations. We didn’t understand the disease, and everybody went into lockdown. Connecting back with the stress and anxiety we felt as a way to empathize with people would be great,” Trivedi said.

“All of this fear and sense of abandonment among those who are the most vulnerable is very real,” said <a href="https://www.uwmedicine.org/bios/gary-lyman" target="_blank" role="link" class=" js-entry-link cet-external-link" data-vars-item-name="Dr. Gary Lyman" data-vars-item-type="text" data-vars-unit-name="621f9350e4b025227d65fb59" data-vars-unit-type="buzz_body" data-vars-target-content-id="https://www.uwmedicine.org/bios/gary-lyman" data-vars-target-content-type="url" data-vars-type="web_external_link" data-vars-subunit-name="article_body" data-vars-subunit-type="component" data-vars-position-in-subunit="7">Dr. Gary Lyman</a>, a cancer doctor and researcher with UW Medicine and the Fred Hutchinson Cancer Research Center
Andrei Box Roc / EyeEm via Getty Images
“All of this fear and sense of abandonment among those who are the most vulnerable is very real,” said Dr. Gary Lyman, a cancer doctor and researcher with UW Medicine and the Fred Hutchinson Cancer Research Center

3. Don’t say: “But you can get vaccinated!”

Again, vaccines don’t provide the same level of protection to those who have weakened immune systems as they do to everyone else. Studies suggest that up to a quarter of people who have a weakened immune system have no antibody response after three doses of the vaccine.

Also, remember that children under 5 are not eligible for vaccines yet — and some people who are immunocompromised are unable to get vaccinated because of their health status.

“There’s a lot of uncertainty around what’s coming next for them. And that uncertainty causes a lot of things,” Trivedi said. “It causes anxiety, it causes anger, upset and frustration for people who are able to get vaccinated but who chose not to or who chose not to take other precautions like wearing masks. It can cause isolation, because people then feel fear of being in big groups or settings.”

That’s why a layered approach to prevention has been important throughout the pandemic. While one-way masking does provide some level of protection, it’s not the same as when everyone masks together.

4. Don’t assume everyone’s relieved.

Again, for many, the easing of COVID restrictions after two-plus years is a happy change. But that’s not a universal feeling.

Mental health experts really worry that people who are immunocompromised will feel even more isolated now than they have before as they see friends and loved ones going on vacations, reconnecting at parties and generally heading back out into the world.

“Instead of celebrating it and flaunting it and posting pictures, or saying things like, ‘At least we don’t have to worry about it anymore,’ remember that that’s not true for everyone,” said Sanam Hafeez, a neuropsychologist and Columbia University professor. “Just a little bit of sensitivity goes a long way.”

5. Do be open to questions about what you’ve been doing.

While you shouldn’t be pushy about why someone is wearing a mask or ask personal questions about their health status, it is important to be open about your own behaviors if someone who you know is immunocompromised asks.

Be prepared to tell them what you’ve been doing and whether you’re vaccinated and boosted. Be forthcoming with the information they need to help keep themselves safe. For example, people who are immunocompromised are accustomed to asking others if they’re sick and might be infectious before they meet face to face, Tovian said. But you can help by offering that information up front.

Don’t underestimate how important connection is right now. Social isolation was a massive public health problem even before the pandemic. Try and find ways to spend time together that feel safe to them.

“You can ask: ‘How can we meet and connect so that you feel comfortable, but also so I get to spend time with you?’” Trivedi said. “It’s about meeting people on their terms without judgment.”

Experts are still learning about COVID-19. The information in this story is what was known or available as of publication, but guidance can change as scientists discover more about the virus. Please check the Centers for Disease Control and Prevention for the most updated recommendations.

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