Immunocompromised Minnesotans struggle with mental toll of isolation three years into pandemic

Sometimes, Eddy Samara thinks he might be willing to put himself at risk of hospitalization or death to get a cup of coffee with a friend: He’s just not willing to risk his partner’s life. 

Samara and his partner, Max Colleatti, are both severely immunocompromised: Samara has a rare auto-inflammatory disorder and Colleatti has a brain tumor. They only leave their house in south Minneapolis for hospital visits and the occasional grocery trip — but most of their groceries are delivered. 

Samara and Colleatti’s daughter, 21-year-old Lexi, lives with them. She’s high-risk for COVID-19 due to a combination of developmental and physical disabilities. 

While death tolls have dropped, COVID-19 remains a leading cause of death and a looming presence in the lives of high-risk and immunocompromised people, many of whom are still taking drastic measures to avoid infection. Those precautions have taken a mental and emotional toll, particularly as the public at large attempts to return to normalcy. 

Samara’s biggest fear isn’t even death: it’s long COVID, which is more likely to happen after a severe COVID infection and comes with incapacitating fatigue, brain fog, breathing problems and other symptoms detrimental to everyday life. 

Samara’s full-time job is managing his family’s health. If he gets long COVID, his family’s precarious situation might come crashing down. 

“It could literally be the difference between living independently in the community and not,” Samara said. 

Just how at-risk are immunocompromised patients? 

More than 7 million adults in the United States are moderately to severely immunocompromised, meaning they’re at-risk for severe COVID-19 infection or death — and less likely to be protected by vaccines. Autoimmune diseases like diabetes or lupus and immunodeficiencies are the most obvious culprit. However, being immunocompromised can also come from life-saving treatments like chemotherapy for cancer patients and immunosuppressant medications for transplant survivors. 

That number doesn’t include people who are high risk for a severe infection in other ways, like Raven Moe, a 27-year-old with spina bifida who can’t cough out fluid from her lungs.

Raven Moe’s mother and legal guardian, Judy Moe, said she doesn’t feel like there’s enough guidance from lawmakers or public health officials. She used to keep track of public health guidance every day, but with no daily updates or press conferences, Judy Moe feels left in the dark about how bad the pandemic really is. That makes it even more difficult for her to decide what’s safe for her daughter. 

“We don’t even really know what the risk is anymore,” said Judy Moe, the director of Richfield Disability Advocacy Partnership. “I don’t know if that’s by design or what exactly, but it gives the illusion that there’s no risk.” 

A few doctors told the Reformer their immunocompromised patients are often (and understandably) more concerned about COVID-19 than they are. Michael Osterholm, an infectious disease expert, said people should feel comfortable in social settings as long as they’re vaccinated and wearing an N95 respirator. 

“You can’t ask people to stop living their lives,” said Osterholm, who leads the University of Minnesota’s Center for Infectious Disease Research and Policy. 

Vaccines aren’t as effective for immunocompromised people, however. Also, while an N95 respirator is more effective than other masks, it’s not foolproof, said Lisa Brosseau, a bioaerosol scientist and industrial hygienist. Brosseau, who also consults with the U’s Center for Infectious Disease Research and Policy, continues to avoid indoor social gatherings and said she understands why immunocompromised people are isolating to reduce risk. COVID-19 appears to be increasingly transmissible: The newest variant, XBB 1.5, is the most infectious strain yet. 

Meanwhile, the Centers for Disease Control and Prevention recommends immunocompromised people continue to mask, avoid crowded indoor spaces and wash their hands. 

Many in isolation said they’re following the advice of their doctors, but some doctors don’t always understand that death isn’t their biggest concern. 

Alex Iantaffi, an immunocompromised Duluth therapist who works with other immunocompromised patients, said they have had better experiences with doctors who have disabilities understanding their concerns and helping them decide what precautions to take. 

“Doctors are just humans,” Iantaffi said. “If they are not disabled themselves, they don’t understand what that means for people.”

Feeling dismissed 

Samara said there’s a “blatant meanness” now that wasn’t present before the pandemic — or even in the earlier stages, when people were still isolating and masking. Samara uses a walker, and was once told by the person behind him at the grocery store that he was moving too slowly. That experience feels like a microcosm of the recent public reaction to the pandemic. 

“At least there was some sense of shame (before the pandemic) — that you should not say that out loud — but now people in positions of power have literally said ‘It’s OK for Grandpa to die,’” said Samara, referring to Texas Lt. Gov. Dan Patrick’s comments. 

Mark Reese, whose husband is immunocompromised, said it’s hard not to resent people who aren’t masking in public or taking other precautions, especially if they’re actively mocking him for wearing a mask. Reese said people have rolled their eyes, pointed at him and his husband and laughed and even coughed in their faces. 

Steve Romenesko, a two-time liver transplant survivor, said asking someone to wear a mask to protect those around them is the “smallest of prices” compared to the precautions immunocompromised people take every day. 

“It really shows, that, like, ‘Oh, you don’t give a shit about me.’ And in some ways, a lot of people probably never did. But I never had to see the receipts,” said Romenesko, who lives in South St. Paul. 

Raven Moe said she understands why her mom is so worried about her, and that her mom knows more about the risks than she does — but it’s a “slap in the face” when people don’t get vaccinated, because it feels like they don’t care about people like her. 

“Acknowledge that people like us do exist,” Raven Moe said. “We are out here, and we are people. And we should be starting to be treated like it.” 

Romenesko said people were more likely to take precautions to make events more accessible just a year ago. Now, he’s been left out of social events altogether. Minnesota’s winter weather throws his isolation into greater relief: When outdoor events are inconvenient, it’s more obvious when people aren’t willing to accommodate his needs. 

When social events do happen, people aren’t telling Romenesko whether they’re sick anymore. 

“You need to tell me those things beforehand because this could literally kill me. This could make me die alone on a ventilator, with none of my loved ones around, because you felt a little awkward about a cough,” Romenesko said. 

Losing access to joy

Reese, a Minneapolis therapist, works with many immunocompromised clients. He said many of his clients are experiencing “decision fatigue” — mental exhaustion from making too many high-stakes decisions. 

“Everything is a constant calculus,” Reese said. “How much at risk am I? What do I need to do? What do I absolutely need to do?”

Many of Reese’s clients aren’t making decisions anymore at all, a common symptom of decision fatigue: choosing the default option rather than the option that is right for them. That can make isolation even worse for them. 

For Romenesko, everything he does has “six more steps,” because he has to weigh the risk of social interactions. 

“Could I go see a movie in theaters if I pick to go at a ‘not-bananas’ time?” Romenesko said. “Maybe, but would I even be able to enjoy it?” 

Romenesko said he’s lost access to “spontaneous joy.” 

Samara said he and his partner talk about finding joy a lot: They’re working on shifting away from survival mode, even if they are still isolating. 

“Our intention for February is ‘Joy now, dammit!’” Samara said. “It almost feels like work to figure out how to do things that were easy and spontaneous… trying to find sources of joy in the middle of all of this is really challenging.” 

No end in sight

Judy Moe didn’t let Raven Moe leave home for two years. But with no end to the pandemic in sight, Judy Moe worried about how isolation was affecting her daughter’s mental health. 

“I kept feeling like even if her mental health suffered, at least she’d be alive,” she said. “But as time goes on — how long can you stay that strict?” 

Now, Judy Moe allows her daughter to go to the Mall of America — which feels safer to her since it’s not as densely packed — but she’s still restricting Raven Moe’s social gatherings. Judy Moe is living with fear and guilt: She knows she’ll blame herself if her daughter gets sick and dies. 

“I feel like you can say over and over again that there are still people living in isolation, and even if they’re not in isolation, still living in fear,” Judy Moe said. “But you can’t make the general population care about people with disabilities and the elderly. And that’s what it comes down to… they care more about their lifestyle than some of our most vulnerable people.” 

Samara said he tries to take it one day at a time. He tries not to worry about whether the risks of COVID-19 will go on forever, even if he thinks they probably will. The most frustrating part of it for Samara, he said, is that if everyone got vaccinated, masked and took proper precautions, he and his family wouldn’t be stuck inside. 

“I wonder if we will ever feel comfortable eating out again,” Samara said.