Immunocompromised Bostonians on navigating the pandemic post-public health emergency

Kevin O’Leary got halfway through the Wegman’s parking lot when he had to turn back to retrieve his reusable grocery bags. What he didn’t forget was his N-95 mask.

More than four months since the end of the national and state public health emergencies for COVID-19, O’Leary is unable to do what many others can: relax his precautions against the virus.

O’Leary, who lives in Medford with his wife and 3-year-old son, suffered a brief illness in 2018 that caused him to need a liver transplant. Although he made a successful recovery, the coinciding medications left him severely immunocompromised, and dependent on many of the protective measures that have since rolled back since the May 11 policy change.

Many institutions — including hospitals — have walked back mask mandates, the CDC is no longer tracking new COVID infections, and access to free testing is stunted as the state closed all of its free “Stop the Spread” testing sites and some of the largest health insurers in Massachusetts are no longer providing free over-the-counter COVID tests.

These changes make mundane errands like grocery shopping a difficult obstacle course filled with risk of infection for those with immunocompromising conditions like O’Leary. Changes in public perception of the virus’s threat have also posed barriers.

“It is isolating to be one of the only people still masking in day-to-day living out there, because now there’s a division of society into people who are masking and people who are not masking,” said Dianna Hu, chair of the Boston Center for Independent Living and a Google employee. “I do feel like … there’s this othering effect, and I wish that people would be more comfortable masking together.”

Although Hu finds that the end of the health emergency felt like “we were getting closer to the light at the end of the tunnel,” her neuromuscular disability which limits her lung capacity to about 20 percent of its full functionality, makes it difficult to be anything but hypervigilant against the virus. As COVID-19 levels in Massachusetts face a recent uptick, anxieties are only heightened for Hu and O’Leary alike.

Watch the video above to learn more about their experiences navigating the stigma, fear, and responsibility of being immunocompromised in a post-public health emergency world.

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Do you have a condition that makes you particularly vulnerable to COVID-19? If so, we want to hear from you. Fill out the form below, or leave a comment, sharing your experience.

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Here’s a collection of responses we’ve received so far:

“Because of my chronic illness, I would be risking death, or even worse - becoming bed bound or having to go on a feeding tube, if I got covid. Yes, I’m sensitive to all viruses, but some are worse than others and covid is one of those. It’s a lonely existence and there is so much I want to do but can’t without putting myself in danger. We can’t even access healthcare safely. Just trying to not ‘fall by the wayside,’ as Dr. Fauci recently put it about those like me.”-Betzi B., Cambridge

“As an immunocompromised patient, whereby the slightest infection could become life-threatening, nothing has changed. I navigate life by wearing a mask when outside the home, and practice the same hygiene precautions used during the COVID-19 public health emergency. I stay out of restaurants and confined spaces, carefully follow medical advice, and contact my physician at the first sign of symptoms of possible infection.”-Glenn H., Norfolk

“I have cancer. I am fully vaccinated and boosted. I am currently participating in a clinical trial of a new drug and I’m waiting to hear whether I can have the next booster. But I have had Covid once and did well and given that I’m vaccinated I feel pretty sure I’d do well if I got Covid again. The problem is it interferes with the various physician and hospital appointments I have and that is anxiety provoking. I mask in crowds. I try to maintain a reasonable amount of space from others. In the line at the grocery store people like to keep moving closer and closer to me. What is it about that? We’ve been going out to dinner, but maybe this winter we’ll get more take out, and avoid weekends. We’ll probably start testing before family holiday gatherings. If I wasn’t fighting this beast I would just use general health precautions. But many people out there do not.”-Anonymous, Norwood

“I am immunocompromised from a 2018 kidney transplant. For me, it is masks in public, especially if there is a crowd. Restaurants only on off-hours when they are nearly empty. No theaters, sporting events, and so on. It is living on constant alert. I know the danger if I get infected so the threat is ever-present wherever I go. Perhaps my biggest disappointment is with hospitals and health care facilities that have dropped the mask requirement to avoid public backlash. These facilities have put the immunocompromised and others at heightened risk. Sorry, but slapping on a mask while in a hospital is not too much to ask.”-John N., East Boston

“Nothing much has changed for me, but I feel somewhat protected having had all of my vaccinations and boosters. I will get the new Covid shot when I can make an appointment and verify that they have the vaccine in stock for my appointment. I have been told by several pharmacies that they only received a few doses. I still wear an N95 mask to enter indoor places. Since March of 2020 much of my life has revolved around keeping myself and my husband safe from Covid infection, while trying my best to protect other vulnerable people. I ask my doctors and nurses to wear a mask, if they are not, and they comply. I am immunocompromised, take an immunosuppressant drug, and only feel comfortable visiting with other people outdoors. It is a good thing I love to walk, swim and participate in outdoor activities. Winter is difficult, but doable with appropriate clothing and a possible road trip south.”-Karin O., Buzzard’s Bay

“It’s difficult and expensive. My partner and I both have conditions that would put us at high risk if we contracted COVID-19. We are often the only ones masking at social events, on errands, on public transit, and in healthcare settings. We don’t do nearly as many things as we used to (concerts, parties, family/community events, vacations, even healthcare appts) because the risk is so great now that almost no one else masks or takes precautions like testing. It’s incredibly isolating and disheartening.”-Anonymous, Mission Hill

“It is much more isolating. I take a B-Cell depleting medication so I don’t respond to vaccines as well as someone with a fully functioning immune system would. Protections are removed everywhere so I don’t go out much to reduce my chance of exposure. When I do have to go out in an N95 mask, I am often stared at, see people roll their eyes at me, and have even been harassed on a couple of occasions. My children attend public school so they are also wearing a mask and even though the schools and their classmates are mostly supportive, it still sometimes causes them to be “othered”. We all still have to be hyper vigilant and it is exhausting.”-Anonymous, Portland, OR

“I wear a mask everywhere I go, including at work (where I am one of approximately three who do out of 50 employees). No one has ever questioned/given me a hard time in public, but I find the process frustrating given that so few are now masking up. Because they are young, healthy, and/or fall into some other category (including unbelievably, ‘anti-vax,’) many people fail to recognize it’s not all about them. It’s about the elderly and immunocompromised you may work with, be related to, or the strangers you interact with daily. I know I don’t want it on my conscience that I caused someone’s illness, hospitalization, or worse, death.”-Anonymous, Taunton

“I have been trying to live my life normally, and that is what I’d like for others. However, once I see positive rates rising, as an immunocompromised individual, I do have to live with an amount of fear. I know we will never go back to most people masking when Covid is prevalent, but it would be so easy to do so to protect vulnerable populations!”-Anonymous, Sudbury