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A person with arthritis, as indicated by red pain spots, is wearing a mask outside of a building with a sign that says "No Masks Required."
Credit: Tatiana Ayazo

This story includes additional reporting from Kelsey Kloss and Leah Rocketto. 

As the U.S. continues to reopen and remove COVID-19 restrictions like mask and social distancing requirements, those who are immunocompromised because of underlying health issues or taking immunosuppressant medications continue to feel left behind and concerned.

Are we listening? Are we making them feel heard and understood?

The U.S. Centers for Disease Control and Prevention (CDC) issued a big change last week in its guidance for fully vaccinated people, saying that those who are fully vaccinated “can resume activities without wearing a mask or physically distancing, except where required by federal, state, local, tribal, or territorial laws, rules, and regulations, including local business and workplace guidance.”

But as with other guidance issued throughout the pandemic, it came with a big asterisk for the chronic illness community:

“If you have a condition or are taking medications that weaken your immune system, you may NOT be fully protected even if you are fully vaccinated. Talk to your health care provider. Even after vaccination, you may need to continue taking all precautions.”

The idea of grocery shopping, grabbing coffee, or sitting in your cubicle at work without a mask may be an adjustment for many people, even those who can’t wait to leave home without a mask for the first time in more than a year.

But for those who are immunocompromised, like members of CreakyJoints and the Global Healthy Living Foundation, shedding face masks and ditching social distancing may not be recommended for some time.

“I would personally recommend immunocompromised patients continue to follow precautions until we have a few more months under our belt,” rheumatologist Magdalena Cadet, MD, Associate Attending Physician at NYU Langone Health in New York City previously told CreakyJoints.

“Given that immunocompromised patients may not have the same degree of protection after vaccination, I can definitely understand their hesitancy and would actually encourage them to listen to their concerns and continue to exercise caution,” says rheumatologist Jiha Lee, MD, a Clinical Assistant Professor at Michigan Medicine. “I know that’s hard now that the CDC has lifted the veil for vaccinated people, saying they can pretty much go back to their lives without masks, but because you don’t know who’s been vaccinated or who is unvaccinated, I would say you should continue to follow precautions, wearing masks, trying to keep your distance, trying to socialize with people where you know of their vaccine status.”

“It should be completely understandable that the idea of not wearing a mask and being around other mask-less people makes many chronic illness patients anxious and uncomfortable,” says Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach for the Global Healthy Living Foundation.

And the rest of society, whether that’s a fellow food shopper in aisle 12 or a human resources department responsible for creating a safe and equitable work environment, needs to empathize with and respect the needs of the chronic illness patient community.

How Immunocompromised Patients Are Thinking About the Mask Guidance

When we asked our patient community on Twitter whether they were changing their mask-wearing habits based on the CDC guidance, the responses were nearly unanimous versions of “no.”

“Nope! I was wearing a mask in public prior to the pandemic during cold/flu season and whenever I traveled and will continue to do so,” @bodymindconsult wrote.

“My doc said keep wearing the mask and social distancing,” @AK3B2 said. “Whose immune system is crap?!?  Mine!!  Anyone else?”

“Sorry that so many think masking is so inconvenient,” said @stirr_it_up. “It was the first year no one in my house had the flu, strep, etc. that turned into pneumonia or something that took me months to fight. Public spaces = mask for me n my crew.”

“I’m still double masking as someone whose infusions prevent my T cells from activating. I only take my mask off around friends I know are vaccinated and aren’t participating in risky behavior,” said @AlexisSMobley.

Some people said they would ease up on wearing masks outdoors, where research shows COVID-19 transmission is dramatically lower than indoors.

“The only area I might be willing to give on sooner is masks outdoors, provided it’s not with a giant crowd nor too long or too close,” said @RipperMD41, noting the reason she’s not changing her approach to mask-wearing otherwise is because “my daughter is too young for the vaccine, case counts are still too high and vaccination rates too low.”

“I’m still wearing one indoors and physical distancing. I carry one for outdoors in case I run into crowds. If I’m alone outdoors, and nowhere near a crowd, I won’t wear one,” said @kht718.

An Ableist Issue

The issue here, however, is bigger than individual patients’ choices about whether or not to keep wearing a mask based on their own health conditions and situations.

As Upgrade Accessibility, a disability rights advocate shared on Twitter, “saying fully vaccinated people can stop wearing masks indoors when the U.S. is nowhere near herd immunity is saying the lives of disabled/chronically ill community have no value. Once again, the economy and ‘going back to normal’ are prioritized over the disabled/chronically ill.”

This is a concern that has been voiced over and over again by disability and chronic illness advocates at various stages of the COVID-19 pandemic — from the early days of March 2020 when Charis Hill bravely wrote on CreakyJoints about disabled and chronic illness patients being forgotten and discarded. “If a public message says we should be fine, e.g., ‘Don’t panic, just wash your hands, and only the sick will die anyway,’ that message will be grabbed with both hands by non-disabled, healthy people and used to remind those of us who are sick to not panic, wash our hands, and, oh, we might be the ones to die, Hill wrote.

It’s this “well, that’s their problem if they’re at increased risk for COVID-19 or if their vaccine didn’t work as well” mentality that is so threatening and disheartening to the immunocompromised patient community.

In a recent poll from our COVID-19 Patient Support Program, people expressed concerns anonymously about how the recent changes in mask guidance made them feel unsafe and left behind.

“I was feeling more comfortable when there was a mask mandate, but reading that there will no longer be a mask mandate, my activities will be restricted pretty much like they were in 2020,” one person shared.

“I don’t think I’ll feel comfortable around strangers for a long time, and I will need to continue wearing my mask and social-distancing in most instances,” said another respondent. “It’s extremely frustrating to be reliant on others getting their vaccines, and then see how many people are choosing to not do so.”

“I’m fully vaccinated, but I’m on immune-suppressive medications, so I’m very wary of being in public with groups outside my extended family and household. I don’t know how effective my vaccination is, and I don’t know who else around me is vaccinated,” another member wrote. “I’m concerned that our state has reopened too quickly and dropped face mask mandates too soon. There are still many vulnerable and unvaccinated people in our community who are not safe and may end up suffering or dying, simply because people are impatient about ‘getting back to normal and restarting the economy.’”

Living in a Maskless World If You’re Immunocompromised

 Like it or not, we’re all going to have to adjust to the easing of masking and social distancing restrictions. The horse is out of the barn.

But we must work to make sure that people who are immunocompromised can be safe, healthy, and in control of their daily circumstances — without feeling like they need to remain in hiding or hibernation.

This means that workplaces and businesses should consider the needs of all their employees and customers before they remove mask and social distancing requirements or require everyone to return to work in person.

This means that school districts should consider the needs and concerns of their most vulnerable students and staff before lifting mask requirements.

This means that all the accommodations that made life easier and safer for many high-risk people during the pandemic need to continue indefinitely. Think curbside pickup, early shopping hours at grocery stores, virtual attendance as an option for meetings and conferences, and more.

And, on an individual level, this means respecting other people’s decisions to keep wearing masks. It means extending empathy and kindness to immunocompromised loved ones for whom navigating this “return to normal” is more confusing and complicated than it is for the average person. It means going out of your way to check in on them, see how they’re doing, and ask what you can do to help make their lives a little easier.

The simplest way to know is by asking your friend what makes them comfortable and understanding that this pandemic continues to impact their lives.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. American College of Rheumatology. April 18, 2021. https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf.

Interview with Jiha Lee, MD, a Clinical Assistant Professor specializing in rheumatology at Michigan Medicine

When You’ve Been Fully Vaccinated. COVID-19. U.S. Centers for Disease Control and Prevention. May 16, 2021. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/fully-vaccinated.html

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