Benjamin, 40, was diagnosed with lupus – an inflammatory autoimmune disease – in 2013. With her immunocompromised status in mind, she, her partner, and their 6-year-old son moved from Brooklyn to Burlington, VT, at the beginning of the COVID-19 boom, seeking an area that isn’t as crowded.
Vermont has had historically low coronavirus case numbers, and more than 80% of its residents are fully vaccinated. Yet, just in the last week, the state – like Michigan, Connecticut, and others – has seen a rise in positive test rates and new cases, a month after the state relaxed its masking and isolation recommendations.
To protect their health, Benjamin and her family have exercised extreme caution throughout the pandemic, foregoing indoor gatherings, traveling on airplanes, and indoor dining during COVID-19 surges and plateaus.
“When my kid’s school changed their mask policy, my risk raised exponentially even though we hadn’t changed a single thing about our own behaviors, and COVID certainly hadn’t changed,” Benjamin says, as she and her family isolated at home after a student at her son’s school tested positive. Her son continues to wear a mask at school, despite the school’s decision to encourage students and teachers to forego their masks whenever possible.
Pressure To Disclose
For Benjamin and other immunocompromised Americans, a new reality has started to sink in, even in the country’s most progressive states: People are moving on from coronavirus.
This shifting attitude was made all the more evident when Benjamin took her son to a recent appointment with a dermatologist. Most people, including medical staff, weren’t wearing masks.
“It’s just really scary as an immunocompromised person to not know what you’re going to be presented with and how to prepare,” she says. “We have to constantly re-evaluate, ‘Do we think we can safely do this?’”
Getting a button that would publicly identify herself as a high-risk person isn’t something Benjamin would have ever considered doing during any other stage of the pandemic. But recently, she’s felt like she has had to disclose her health concerns from the get-go to soothe social pressures or to gently nudge the unmasked people around her into adjusting their behaviors.
When someone is immunocompromised or immunosuppressed, their bodies have a harder time fighting off infection and disease. If a weakened immune system is the result of a chronic illness like lupus, rheumatoid arthritis, or asthma, then that person will be immunocompromised permanently. But if someone is undergoing treatment for a disease such as cancer, their immunodeficiency may only be temporary.
There is a pervasive disconnect between “the reality of the virus and what society is willing to do to mitigate its risks,” says Jorge Salinas, MD, an infectious disease expert and a professor at Stanford University.
“So much of the country has checked out … When in reality, it’s in the intertidal periods – between waves – that we should be rapidly preparing for the next wave. It’s almost guaranteed that there will be one.”
Neurologist Vivian Cheung, MD, a professor of human genetics at the University of Michigan Medical School, says these loosening public attitudes and safety measures are even seeping into academic medical spaces.
Cheung has a rare genetic disorder, an unnamed mutation of the LTBP4 gene, that causes her immune system to fail.
That’s why it was so confusing to her – on both a personal and professional level – when she learned that, in order to be a presenter at an upcoming conference, she had to either attend in person alongside thousands of others, or reach out to a conference administrator directly and explain why she wanted to present virtually. Permission to be virtual would only be granted in “exceptional circumstances and on a case-by-case basis,” the conference site says.
“I’m a full-tenured professor, so it’s one thing that I disclose [my immunocompromised status], versus a student who just wants to attend the meeting or present a poster,” Cheung said. “They should not have to feel the pressure of disclosure.”
Cheung chose not to sign up for the virtual conference. While she does see patients in person, she continues to conduct her research lab remotely, avoids indoor dining, and limits any time spent indoors around others as much as possible.
Illness Feels Inevitable
It’s no secret that, even when COVID-19 cases are on the decline, those with immunodeficiencies who contract the virus are more likely to develop severe illness. Immunocompromised people who are able to get fully vaccinated are also more likely to experience breakthrough infections.
At the start of the pandemic, Annabelle Dowd, 26, lived in strict isolation with her roommates in Chicago until she returned to her restaurant job in October 2020. Dowd has type I diabetes, but she couldn’t afford to not work. Over time, she felt like no matter how rigidly people followed COVID-19 safety protocols, people – including other immunocompromised members of her community – were still getting sick.
Dowd, now a graduate student at Medill School of Journalism at Northwestern University, started to feel safe going to more gatherings after getting her full dose of the COVID-19 vaccine. She still wore a mask during indoor events, but she thought about the pandemic differently than she used to.
“I’m always going to do what I can personally, I’m going to get vaccinated, I’m going to get tested regularly, and I’m going to isolate during major waves or intense breakouts, but I’m not going to never go to a party again,” says Dowd. “The same way that I am about drinking or having ice cream once in a while – you can do those things with diabetes, but you don’t do them all the time.”
As the pandemic unfolded, she noticed that her anxiety around illness was not as pronounced as it was in most people around her. She came to understand that, because she’s already so accustomed to living with a constant threat to her health, the threat of COVID-19 felt like just another uncontrollable factor on a list of other health concerns.
Dowd ended up contracting the virus twice, during the Delta and Omicron waves. Ever since her first infection, she says she has been experiencing symptoms of long COVID, the most prominent of which have been problems breathing.
Finding a Balance
After experiencing a leukemia relapse in June 2020 and undergoing a bone marrow transplant over a year later, Nelson Peralta, 26, wasn’t able to get vaccinated as soon as everyone else.
Like Dowd, Peralta, who was first diagnosed with leukemia at 16, is used to being relentlessly vigilant about his health and safety. For much of the pandemic, that manifested in practicing an abundance of caution, living by the most stringent safety protocols in his everyday life.
He ended up getting the Johnson & Johnson shot before his transplant, and would later receive another dose of the vaccine as well as a round of Evusheld, the monoclonal antibody treatment designed for people who are immunocompromised, months after he recovered.
While Peralta has remained cautious, his time spent in the hospital for treatments coupled with the months he spent indoors recovering from his transplant have given him a more balanced outlook on what life during COVID-19 can look like for him during this new phase.
Based in Los Angeles, he has taken up indoor dining and has gone to a couple of concerts, so long as vaccinations are required. Those activities do come with a bit of anxiety, Peralta says, but he feels encouraged to enjoy himself while he feels healthy enough to do so. Still, he acknowledges that his situation is different in many ways from the experience of other immunocompromised people.
“My status as an immunocompromised person comes and goes. For other people, they're immunocompromised for their whole life, so that also adds to the nuance of my position where I know I'm getting healthier. And so that does change the way that I make decisions,” says Peralta.