The New Normal: Immunocompromised Families Navigate Ever-changing Landscape of COVID-19

Facebook group provides comfort to immunocompromised families in an unsympathetic “Covid normal” world.

The world turned upside down for Linda Smedley Dowsey, a mother of five, when the COVID-19 pandemic hit. While COVID is dangerous to everyone, it is especially terrifying for Dowsey. She suffers from sarcoidosis, which Medscape describes as a “multisystem inflammatory disease…that manifests as noncaseating granulomas [small areas of inflammation], predominantly in the lungs and intrathoracic lymph nodes.” To manage this disease, Linda takes immunosuppressive biologics, drugs produced from living organisms that severely hinder her body’s immune response to COVID-19. Drugs like hers are one of many causes of immunosuppression, which affects 3% of US adults, including people with organ transplants, autoimmune disorders, or taking other immunosuppressive drugs.

Dowsey was desperate for information. “I couldn’t get any information from anyone. My doctors, who’ve been amazing treating my condition for years, they knew nothing…I started having to do research on my own,” Dowsey said in a Zoom interview. Dowsey created the Facebook group Navigating COVID 19 Life for Immunocompromised and High Risk Parents to address the information void in July 2020. As of December 2021, the group has 270 members. While there are about ten other groups for parents dealing with COVID-19 (like #covid19MommySupportGroup with 957 members) or those who are immunocompromised (like Immunocompromised People Are Not Expendable with 370 members), Dowsey’s group is the only one to fill this specific niche.

Each week, roughly three posts draw as many as thirty-four comments each. Many posts are of members asking questions about new information they’ve heard about the vaccine or preemptive treatments, along with those sharing parenting tips and life updates with others who understand their struggles. Other posts share new studies and seek support when dealing with unsympathetic institutions like workplaces and schools.

The group answers vital questions, says Dowsey: “How can we have some type of normalcy in our life and do it safely…and how can our kids continue normal lives and not be impacted, but [still] keep us safe? … I just want it to have an avenue that we all can share information, ideas, and that’s kind of what it became.” Although the group was initially only for immunocompromised parents, the group has evolved to include parents who have immunocompromised children and the children who are themselves either immunocompromised or have immunocompromised parents as well.

The group is unique in two ways: first, the COVID-19 pandemic has created an unprecedented situation in which doctors, the people usually best informed about health topics, are just as clueless as the general population as new, contradicting information emerges almost daily. For example, Dowsey “went to [her] rheumatologist and asked about the fourth [vaccine] shot, and [he] told [her] he had never heard of the fourth shot for immuno[compromised people], and this was four days before someone posted [about] it in the group. …Our doctors are clueless. They don’t know. And if they do know, they’re so overworked they don’t have time to tell you right now.” She says, “mainly we’re getting information firsthand through the group before our physicians are even telling us.”

Second, this group is not just for immunocompromised people, but for their parents, which adds an extra layer because “no one can understand the impact that it’s having on these children but a parent in those [sic] situations, because either way, my kids have suffered because of my condition.” One woman has found comfort from the support of the group as she faces financial hardship, having had to quit her job and having her husband take a lower-paying job so they can be at home and not endanger their immunocompromised child.

This balance becomes especially difficult as COVID-19 becomes less of a threat to many because of widespread vaccinations, which has led to easing restrictions and institutional precautions. As schools transition back to in-person learning, Dowsey, who kept her children online for the 2020–2021 school year, drew from the experience of other parents in the group whose kids were in in-person school last year. For example, Dowsey’s daughter, a dancer in her middle school, struggled with breathing through the mask as she danced. Rather than pulling her out of dance, Dowsey discovered athletic masks through the group, which allowed her daughter to maintain a normal life with extracurriculars. Said Dowsey, “I would have never known those existed if a parent hadn’t told me.” Dowsey says other tips and tricks revolve around teaching kids to like their masks. “You know, it’s not a punishment to wear the mask.” She tells the story of this one woman whose son loved the show PJ Masks, and so, to help her child like the masks they wore, she sewed masks in the different colors of the show’s characters, which successfully made her son love to wear the masks.

Tips to encourage mask-wearing are especially important in the face of hostility from some parties. Dowsey, a resident of Knoxville, Tennessee, noted that “we have parents outside of schools picketing every single day and, you know, telling us, telling our kids that they’re sheep, and that they should think for themselves, and they’re spineless and mindless.” This lack of compassion and understanding even goes as far as anti-maskers coughing on students who wear masks as they enter schools. To help these children adjust to this hostile environment, the group has allowed some kids to join. “Some of the kids are actually looking for a safe place to say how they feel about either being immunocompromised and having to go to school or not being able to go to school and how it’s impacted them with their friends and being able to hear from even adults and other people in their community.”

This shared understanding of their extraordinary and difficult circumstances creates a sense of community. For example, when “one member had a family member that passed away from COVID, group members were offering to send food and gift cards, just acts of kindness to a complete stranger. We all realize we’re all in this together.” This sense of community also lessens Dowsey’s administrative burden. She says, “I kind of let everyone post what they want, but kind of in the beginning, I told everyone that we’re here to support each other and be respectful and it’s been that. And I’ve not had any spam — like no one’s been in there soliciting or selling anything, and most people are like, ‘this is unheard of’ compared to other Facebook groups.” While a large majority of the group is pro-vaccine, the group does have one anti-vax member. Said Dowsey, “They don’t believe in any vaccines and no one kind of pressures her because with us, we all know that there’s meds a lot of us can’t take and a lot of things we can’t do and we just respect her. And I’ve been amazed how respectful the group has been, but nobody pressured her. She’s in the group asking for suggestions on how she can navigate this without being vaccinated, and everyone has respected her opinions and her beliefs and still gave her information to help her out.”

Reflecting on the group’s future, Dowsey says that “the group will still remain as a tool of information, if nothing else, a community of immunocompromised people who can relate to each other even on the flu because we all know flu could take any of us out, so it’s kind of that same concept, and I think it’ll just it’ll stay that way.” She hopes that as the world returns to normalcy, people can take with them the knowledge that “there’s people out here whose [immune] systems can’t fight for them like a normal person, and if you can just take a small step to keep it everyone in the world safe, our world will be a better place.”