One morning in March 2020, Terez Giuliana sat down to compose an email to her daughter. In the subject line, she wrote, “If I die.”
Giuliana, 65, of Philadelphia, has common variable immune deficiency, a disorder characterized by an inability to produce antibodies, sometimes even after receiving vaccines, leaving those who suffer from it very vulnerable to infections.
Covid-19 posed an extraordinary threat to her health. So as the virus began to sweep through the United States, Giuliana felt a need to get her affairs in order — just in case.
In her email, she typed out all her passwords, detailed whom she wanted to allocate her jewelry to, and decided who should care for her cats if she were to die.
Days later, she left the job that she loved as a homeless outreach worker in Philadelphia’s bustling Reading Terminal Market to minimize contact with other people, and made a pact with her husband to do whatever it took to stay safe.
That meant not seeing friends in indoor settings or going to the movies, activities that most people gave up in 2020, but that Giuliana has had to continue to forgo through this year even after becoming fully vaccinated.
That’s because no doctor can give her a guarantee that her vaccinations afford her adequate levels of protection against the coronavirus.
“Nothing changed for me,” Giuliana said. “I do resent that, and not being able to work breaks my heart, but I’m no good to anybody if I’m dead.”
For many people with weakened immune systems, vaccines have not offered the same degree of relief and return to normalcy as they have for those with no underlying health conditions.
Some, like Giuliana, are unsure how much the vaccine shields them, since immunocompromised people were not included in the clinical trials. Others, due to their health conditions, are at higher risk for complications if they get the coronavirus. Some fall into both categories.
Teresa M. Stallone, 46, of Chicago, has psoriatic arthritis, a painful autoimmune condition affecting the skin, joints and other areas. For her, uncertainty over whether her vaccinations have had the desired effect is difficult, but more frustrating is the lack of courtesy she encounters in places like the grocery store.
“When I see people walk in without masks, I definitely try to stay away from them,” she said. “Some people’s carelessness, not realizing how this can affect others, is maddening.”
“Some people’s carelessness, not realizing how this can affect others, is maddening.”
Being immunocompromised in a pandemic can also be isolating. Jemela Williams, 40, of Kansas City, Missouri, has sickle cell disease, a genetic red blood cell disorder in which a lack of oxygen flow causes pain and organ damage.
When those around her got vaccinations, many started resuming what they had put on hold during the pandemic — while Williams felt a need to continue living pretty much as she did before vaccines were available. She has still barely seen her best friend face-to-face and has no idea when she will feel comfortable traveling again.
“Of course I don’t begrudge people for having their fun,” she said. “But it is incredibly frustrating because you are kind of left behind. And it feels like everybody else is not taking things as seriously as you are.”
‘Nobody’s ever gone through this’
A wide range of conditions can lead to weakened immunity, including cancers, inherited genetic defects and immunosuppressant medications taken after organ transplants or for other conditions. People who are moderately to severely immunocompromised make up 3 percent of the adult population, according to the Centers for Disease Control and Prevention.
In August, the Food and Drug Administration authorized the use of a third dose of Covid vaccines in certain immunocompromised individuals, finding that they were at risk for severe disease.
While there are tests that measure levels of antibodies after vaccinations, experts say it’s too early to be sure exactly what levels are needed for complete protection.
And if they are protected, it’s unknown how long that protection will last. That’s a question that comes up frequently among those with primary immunodeficiencies, a group of more than 400 rare chronic disorders in which the body’s immune system is missing or functions improperly, according to Kathy Antilla, vice president of education for the Immune Deficiency Foundation, a nonprofit advocacy organization for the primary immunodeficiency community.
“Worldwide, nobody’s ever gone through this, let alone in our rare disease community. It’s challenging all around,” she said.
The best hope, experts say, is to surround the most vulnerable members of society with fully vaccinated individuals so the virus does not have a chance to seek them out.
“What if the person in the store next to you has rheumatoid arthritis, or had a kidney transplant, and what if you kill them?” said Dr. David Thomas, director of infectious diseases at Johns Hopkins Medicine. “By getting vaccinated and wearing a mask, you do a lot to help those people whose immune system can’t respond to the vaccine.”
But some immunocompromised people have found that by taking such precautions themselves, they stand out.
Jessica Jacobs, 29, a producer and writer in Los Angeles who has rheumatoid arthritis, was doing a freelance job over the summer as the delta variant started spreading. Masks were optional for those who were fully vaccinated, and she was the only one in her area of the office wearing one.
“One co-worker at the time said, ‘I didn’t know if you were vaccinated or not,’ which is the biggest insult possible, because I cannot even be around unvaccinated people,” she said.
How to show support
There are ways that friends, family and institutions can help vulnerable individuals.
“This brought to light what is possible, whether it be work from home, or taking classes online,” Stallone said, adding that she hoped these accommodations would be extended past the pandemic. “Even the special hours stores did — my doctor wrote a note for me allowing me to shop with seniors because I’m immunocompromised.”
Anxiety at this point in the pandemic is still very real and very justified for many people with compromised immunity, Antilla said, encouraging those around them to not pressure them.
“If you’re with somebody who says, ‘I have this diagnosis, I don’t feel safe doing A, B, C or D,’ please be supportive. You don’t have to understand. Just be supportive,” she said.
Jacobs echoed that.
“I’d rather have someone ask me a billion ignorant questions rather than not care and endanger me and my family,” she said.
“I’d rather have someone ask me a billion ignorant questions rather than not care and endanger me and my family.”
Support networks can be key, others said. While not everyone in her life gets what she is going through, Williams has found comfort in an online sickle cell support group. Before the pandemic, the group used to meet at a local hospital every month, but now gets together weekly over Zoom — which has meant it attracts members from as far away as Africa and London.
“We’ve just formed such a family,” she said. “As soon as the numbers go down or something is better, we can’t wait to all meet up and hug each other.”
Giuliana has felt most supported by those who agree to what she calls her “calculated risks” since she got vaccinated.
Although she had to give up her job doing outreach to homeless people, she has taken a volunteer position serving outdoor meals to people in need. While she cannot partake in indoor gatherings, she does outdoor visits in masks with her great-nieces and great-nephews who are too young to get vaccinated.
She doesn’t know when, if ever, she will feel completely safe again. But in the meantime, she says, she shows appreciation for those around her who are helping to keep her healthy.
“Covid has made me realize how vulnerable I am, and not just to Covid, but to everything,” she said. “I thank people for wearing masks all the time.”
CORRECTION (Oct. 23, 2021, 9:35 a.m. ET): A previous version of this article misstated how frequently a sickle cell disease support group attended by Jemela Williams used to meet in person. It met at a hospital monthly, not weekly.