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How the immunocompromised say it feels to live in a post-mask mandate world

People with compromised immune systems, be it from acute or chronic illness, feel like the world is leaving them behind as COVID-19 precautions vanish.
Credit: Nuthawut - stock.adobe.com

PORTLAND, Ore. — More than two years into the coronavirus pandemic, words like "burnout" and "fatigue" are making headlines and featuring heavily in tweets and proverbial watercooler talk.

But the sickest among us pay an unseen toll on top of the struggles everyone has been dealing with during the pandemic. For the immunocompromised, this toll can include job loss, isolation and the particular sort of exhaustion that comes from the need for constant hypervigilance — worrying not only about how you’re protecting yourself, but whether you are entering an environment where others will make sacrifices to protect you, too.

Immunocompromised and at-risk Oregonians say they’ve felt forgotten since the start of the pandemic.

The invisible burden 

Kate Baum was a bedside nurse in late 2019. It was her dream job. But when the pandemic hit, she had been recently diagnosed with stage 3 cancer and was undergoing chemotherapy. 

"[I was] at work with a mask on before anyone started wearing masks," Baum explained.

But in those early days of the pandemic, she didn’t feel there were adequate rules in place to protect her at work. Not feeling safe because she was immunocompromised, she left her job and hasn’t returned.

“It’s been isolating and scary,” Baum said.  

Baum and her family have since relocated to the Vancouver area. But she, like many other immunocompromised Oregonians, watched what health authorities were doing closely. 

Credit: KGW
Kate Baum

"It's sort of, I just feel like, poor policy on top of poor policy," Baum said. She said she also lost faith in the decisions the Centers for Disease Control and Prevention (CDC) was making regarding the immunocompromised. 

"I think you’re just kind of waiting for at least a plan,” said Baum. “The CDC really kind of lost it for me after all their little missteps. Like everyone taking their masks off in May. Nothing about it felt right or safe or OK for me to be able to be out in the world.”

Portland-based cartoonist and author Jonathan Hill is a kidney transplant recipient. He said he feels like the world is facing an empathy problem when it comes to COVID-19.

“There's an attitude for people who are healthy that are like, 'Well, you must have done something to be sick,'" said Hill. "Whether it's your diet or your weight or whatever, they think that because I'm healthy and it's not going to happen to me." 

He takes medication to ensure his body doesn’t reject the transplant, which simultaneously makes him immunocompromised. Beyond that, he has developed other conditions that further put his immune system at risk because of the medications he has to take.

“I mean, just from my experience, my kidney failure was not genetic. It was literally bad luck where the billions of things happened into my body, one of them was out of control a little bit. And then it caused this thing that was this long-term thing,” Hill explained.

Credit: KGW
Jonathan Hill

Hill said he understands the pandemic fatigue that everyone is experiencing, including fatigue with mask mandates and limiting social interactions.   

"I'm sick of doing it too. Like, we're all sick of doing this. Nobody wants to be doing this. I'd love to be going to the movies or drawing at coffee shops or things like that. But, you do it to keep yourself safe and keep others safe,” Hill said. "It's tough because it's like, the whole world seems like they're ghosting us, right? Everybody deserves to survive and live and, you know ... know what I mean?"

The extra toll isn't just on those who are severely immunocompromised.  

"It's not just a mental toll for me, but on people in our lives and like our partners," Hill said. His wife has had to take on any tasks outside the home, such as shopping for groceries and other necessities.  

"There have been like spurts where it feels like it's safer, so I might go do things — but you know, there's just that worry of like even just going to the grocery store and then coming back and being like, 'Oh my God, this person wasn't wearing a mask and they were next to me and was close enough, was I safe enough? Should I have done something? Should I have said something?'" Hill said. 

While immunocompromised people carry the extra burden of hypervigilance when it comes to their physical health in a pandemic, the mental health strain is also an issue.

"So, I think that that's also sort of an unspoken thing, like people who are in our spheres or our bubbles or our lives and that sort of burden that they have to carry," Hill said.

He feels like there is an acceptance among the general population that because the latest strains of COVID-19 produce symptoms, particularly in vaccinated people, that aren't as severe, the attitude is that everyone would, or should, get the virus.

“My plan is to never get it. You know what I mean? We're doing every single step we can so that I will not get it and just this acceptance. It goes back to that sort of acceptance of a cost," Hill said.

One of those costs is continuing to wear a mask as the mandate in the state expired in March.

“I don't think there's a one-size-fits-all for masks,” said Chief of Infectious Disease at Kaiser Permanente Katie Sharff. 

“I feel for our most vulnerable population or immunocompromised individuals it's really an unfair situation to be in as an immunocompromised patient,” she continued. “As the country moves on from this pandemic and says ‘The pandemic is over’ — if you're immunocompromised, you can't have that kind of same level of elation.”

Sharff does warn, however, that the pandemic is not over. She said people will need to practice grace and respect with one another as the general population moves forward in the pandemic; not everyone is ready or can remove their masks.

RELATED: Yes, there is a new coronavirus subvariant called XE

The year of impossible decisions   

"I called it the year of impossible decisions," Baum said. "Like I feel like we were being asked to make impossible decisions about our families and our kids and what's best for them. And going through another round of chemo right now and knowing that my immune system's going to take a hit ... but like the kids, the normalcy that they have is going to school." 

Baum said her family’s big "risky" decision for the year was allowing her children some semblance of normalcy while attending school. But the normalcy can only stretch so far. 

"At the beginning of the year, we were getting all these birthday invitations to go to these pizza places and stuff. And it was like, 'I don't want to have to tell my kids' friends that I'm sick,' you know? But you immediately have to say, 'I'm high risk,'" Baum said.  

Many people live with everyday invisible illnesses that affect millions of Americans. These illnesses also put them into the immunocompromised category, and many feel their concerns have fallen on deaf ears too, despite being representative of a large portion of Americans.  

Jay Lundy is in their 20s and has polycystic ovary syndrome (PCOS), a chronic illness that affects insulin levels and hormones but can also cause issues in other areas like thyroids. It often causes a weakened immune system and is estimated to affect nearly 5,000,000 people with ovaries. Lundy also suffers from chronic pain.

Credit: KGW
Jay Lundy

"I mean, over the whole two-ish years now, it's been a lot of sadness and grief and anger – just different forms of it," Lundy said. "There's not a lot of space for the grief of COVID in general, like in a personal sense and a society sense. Because it's still happening. It's hard [to grieve] something that's still happening and is so huge." 

Lundy contracted COVID-19 in March 2020 and suffered with long-COVID. Finding stable work became difficult between fluctuating COVID protocols and tending to their physical needs. A lot of places hiring for work are places that would expand an immunocompromised person's bubble beyond control, therefore exposing them further to the possibility of becoming ill — or in Lundy's case, ill again.  

"It scares me and, I don't know ... at this point, I'm scared of trying to find a job and be more in the public," Lundy said. "I need to move. I'm moving in with friends, so it's cheaper to live and so then there's that, you know? I've been living alone this whole time, so I've been able to protect my bubble, but now I need to move in with a friend and she'll need a job. So, I’m trying to prepare for that much bigger bubble and what that means."  

Lundy said the attitude toward the immunocompromised from the CDC has been frustrating and upsetting.  

"What's classified as comorbidity can be so small in my opinion — if you're overweight or you have asthma, even if it’s minor," Lundy said. "A lot of people have three or four and aren't even really thinking of them as comorbidities.” 

A comorbidity is when one or more conditions is occurring simultaneously with a primary condition. According to the CDC, there is a list of medical conditions that put you at a higher risk of contracting COVID-19. Having certain medical conditions as a comorbidity to COVID can make the impact of COVID worse on these individuals.

While some immunocompromised people feel their lives have been devalued in the pandemic, others feel like their needs have been lumped together with the elderly out of convenience.

"I feel like we have been kind of bulked with elderly, just kind of ignored or a second thought," said Jennifer Taft.  

Taft worked her entire life in early childcare. However, with rheumatoid arthritis, a chronic and immune system-based disease, she could no longer responsibly work with children too young to be vaccinated against COVID-19. It’s estimated that more than 1,000,000 Americans have rheumatoid arthritis, leaving them vulnerable like Taft.  

"When vaccines rolled out, we were kind of like an afterthought of, 'Oh yeah. Them,'" said Taft of the Oregon Health Authority’s approach to the immunocompromised. "I kind of feel like you've just kind of been out on your own to figure it out.”  

Credit: KGW
Jennifer Taft

She shares the same concern as Hill in feeling like she’s burdening others with her health concerns. However, she said bringing up masking, vaccination and precautions at family gatherings have caused tension, all added weight to the burden the immunocompromised may carry. 

"I try to make sure that I'm not overanalyzing everything, but it also feels like the entire pandemic has a series of mental gymnastics," she said. "I don't think people understand, who are normally-functioning people, that for people like me or other immunocompromised people, it's this constant mental gymnastics of weighing risks versus benefits.”   

Taft said that it is important to remember marginalized groups while distributing resources, which OHA said it would do with the 12 million COVID tests it ordered. But she wonders where the same sort of consideration is for the immunocompromised who may intersect with a number of marginalized communities, including the disabled and economically depressed. 

She said feeling forgotten as an immunocompromised person can be challenging, as those who deal with medical issues often also struggle with mental health issues. 

"This whole time I have felt very ignored by the CDC facts. It's devastating in some ways because you're already in a mindset of a little bit of a dark place sometimes,” said Taft.

Sharff said immunocompromised people have to find a balance if they can.

“There's been a lot of other suffering aside from COVID— a lot of mental health suffering, a lot of addiction,” said Sharff. “For our immunocompromised, as for everybody, there needs to be some balance in terms of finding those joys, those things that make you thrive while still being cognizant of the risk and making practical decisions.”

RELATED: Washington health officials vote against requiring COVID vaccine for students

OHA follows CDC’s lead when it comes to immunocompromised 

Jonathan Modie, a spokesperson for Oregon Health Authority, said it has been the organization’s goal to reach marginalized communities with COVID resources. 

"We have really, throughout this pandemic, have emphasized the need to reach all people in Oregon who are severely impacted by COVID," Modie said. 

OHA data shows that people with underlying conditions like cardiovascular disease, diabetes, neurological disorders, obesity, those who are former smokers and people suffering from any underlying condition have been most affected in terms of hospitalizations and deaths. 

People with any sort of underlying condition account for 81% of the state’s hospitalizations and 92% of deaths. 

Immunocompromised people account for 7% of all the deaths in the state and 4% of all hospitalizations, according to the data.

“But aside from age, immunocompromising conditions absolutely increase your complications from COVID illness, as well as your risk of dying from COVID. That has been well determined,” said Sharff. “I see it on a day-to-day basis. I see it in the hospital — immunocompromised individuals, unfortunately, do have more complications and unfortunately are more likely to die from COVID than their healthy counterparts.”

OHA follows the CDC guidelines for what qualifies as an underlying medical condition and for what qualifies a person to be immunocompromised. When asked, no specific guidance from OHA for immunocompromised Oregonians could be provided. However, the CDC gives guidance that suggests getting vaccinated, seeking care when needed, continuing with your medicine and preventative care (despite doctors and hospitals being backlogged with COVID patients), and accommodating dietary needs to avoid triggers.  

When asked if the COVID tests that Oregon ordered would be sent to any organizations that prioritize the immunocompromised, Modie said: "Those also are being directed to local public health authorities, to healthcare partners, K-12, for employees and students, and then also community-based organizations that support and serve people in communities of color, organizations that serve older adults, people with underlying health conditions who have issues with access to testing, and then, of course, people who have compromised immune systems."  

The test kits are available through community organizations, but nothing specifically tailored to the immunocompromised.  

The most effective thing immunocompromised people can do, besides being vaccinated and getting a booster shot, is continue to mask, Sharff said. For the best masking protection for immunocompromised people, Sharff recommends wearing a K-N95 mask. Though she said an N-95 mask will provide the most protection, you must wear something that is comfortable enough that you won’t mess with it and break the seal it creates over your nose and mouth.

“I wouldn't encourage you to wear a cloth face covering — as cute and fun and fashionable as they are," Sharff said. "It really is not practical.”

Sharff warns against being lulled into a false sense of security. As the two-year anniversary of the pandemic passes us, she said she hopes we have learned to invest in infrastructure to make us stronger against what will come in the future.

“If we don't have another variant, there will be another pandemic ... maybe not in our lifetime, but there will be, and we really need to invest so that we are better prepared,” she said. “I hope we just don't lulled into this false sense of security that we're back to 2019, everything's better. That's what worries me, that [we’ll] quickly forget all of the suffering and [fail to] invest in the lessons learned. That's my fear, but my hope is that we won't.” 

    

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