Listen to October Krausch discuss this story on our podcast (timestamp: 6:12):
Key points you should know:
- It is very common for people with Long COVID and those taking COVID-19 precautions to experience grief over lost intimacy with friends. In a Sick Times survey of 2,586 people, 81% reported having lost friends over differences in COVID-19 precautions.
- Disability studies scholars say there have always been people who were not able to risk going out in public, but COVID-19 is leading many more people to experience the ableism of our social world.
- Being hurt by friends who do not take COVID-19 seriously has made many people afraid of the emotional risks of making new friends, leading to even more loneliness.
- Making friends with other disabled people can be one powerful way of combating isolation. “Access intimacy” refers to the support that comes from having another person understand access needs on a deep, nonjudgmental level.
- Letting go of friends that do not share values (around COVID-19 or other things) and focusing on specific relationships where COVID-19 practices are aligned can lead to overall better relationships. One way to do this is to join a local clean air collective or mask bloc.
Over the last five years of the ongoing COVID-19 pandemic, many people have experienced significant changes and ruptures to their personal relationships. People with Long COVID and people taking COVID-19 precautions have lost many friends as they are not able or willing to return to “pre-pandemic” behaviors.
This significant grief has received very little public attention, but the extraordinary response to a The Sick Times survey indicates a strong urge for people to talk about this experience.
Of 2,586 people who responded to the survey, 81% reported having lost friends.
One woman told The Sick Times, “I don’t see friends often because I hate feeling like the bad guy or like a burden, telling them they have to mask to hang out with me.” Another respondent called this “the pandemic of abandonment.”
The grief of lost friendships can be overwhelming, but disability justice organizers emphasize that the ruptures people are experiencing related to COVID-19 are just one example of the larger experience of ableism in our society. However, there are existing traditions of organizing and caring for one another that those taking the pandemic seriously, or “still COVID-ing”, can draw on. These include a few novel ways to make friends and spend time together.
Safer Shared Air Collective in Southeastern Michigan is one of many organizations enabling people to find new friends and socialize without abandoning their values around COVID-19 and disability justice. Participant Francis Baetz said organizing with the group has felt like the “world opening back up again” in a way that previously felt impossible.
Friendship rifts are part of larger context of ableism
In talking to people about the challenges with their friendships, one question comes up again and again: “what are our friends thinking?” For people working hard to stay informed on COVID-19, people disabled by COVID-19, and people doing everything they can to avoid COVID-19, it is hard to understand why close connections do not change their behavior.
Having friends who do not seem concerned or even aware of the differing needs of a disabled person is common, said Natasha Abner, a disability studies scholar at the University of Michigan. “Society’s really designed so we don’t know anything about disability,” so most people and most behaviors are ableist as a default, she said.
Our friends’ behavior is mainly the result of people just not thinking at all, especially if they have no personal experience with access needs. Since ableism is so embedded in our society, friends who are just doing what everyone else does are moving in accordance with that ableism.
Society’s really designed so we don’t know anything about disability.
Natasha Abner
This behavior can feel hypocritical coming from people who identify politically as on the side of justice — but that identification itself can hinder a person’s self-perception that they too are part of a problem. Many people simply do not see themselves as part of an ableist system even when it comes to listing very specific behaviors, like being unmasked on public transportation or at the store.
Some less-cautious friends are simply struggling themselves. They, too, are being gaslit that the pandemic is over. And access to masks and tests is expensive, pandemic unemployment insurance has disappeared, and many people do not have sick leave or COVID-safer ways of caring for children.
One survey respondent, who said they feel “embarrassment” about not always being as cautious as they could be, shared that their experience “is one of constant contradictions and desperately trying to engage with causes I care about, activities that keep me sane, and the endless horror of living in a pandemic that the world around me has forgotten.”
COVID-19 only seems unique due to the sheer number of people who are having new experiences of ableism all at once, Abner said. “There have always been disabled people for whom it is dangerous to go out in public,” she said.
For some people, friends’ inability to put effort in to limiting COVID-19 spread is a question of principles. Among the survey respondents, 81% said that they have experienced a values clash with their friends around actions during a pandemic, while 70% said that the pandemic has made them aware of differing values that have already been there.
In some cases, it’s the COVID-conscious person that has changed, not the friends.
Many people may not have thought much about ableism or disability justice prior to COVID-19 — but now, as a result of learning how to take COVID-19 precautions, these folks have become disease prevention advocates.
In other cases, a conflict around masking or avoiding COVID-19 brings to the surface differences between friends that pre-date the pandemic but were ignored or not noticed.
That’s the case with Herman, who described a closeknit friend group that had held together since elementary school. (Herman asked not to share his last name for privacy reasons.) Initially, these friends banded together and met on Zoom weekly throughout 2020. Then as the vaccine rollout began in 2021 and the “push back to normal” became more mainstream, Herman’s friends began venturing into the world unmasked. By the end of 2021, the friendship was damaged.
This experience was deeply painful, said Herman, who identifies on the autism spectrum. But he’s since made new friends who are more closely aligned in their practices around COVID-19, leading him to see significant problems in his older friendships that predated the pandemic.
Oceans of grief
Disappointment and grief permeate these damaged and broken friendships.
- A British woman: “I’ve been disabled since covid started (with a post-viral illness similar to [Long COVID) and I desperately don’t want to see the same happen to my friends.”
- A white man, after his carefully built COVID-caring community fell apart in 2023: “I have never felt more depressed in my life, and some days it really feels like there is no way out for me and my family, no way to get back to a life where we can share with, care for, love and be loved by others (outside of the few treasured people in our lives who we are still able to do this with).”
- A young trans person: “I haven’t made a single friend, let alone COVID-cautious friend in college … . I’m very sad that I didn’t have fun college memories of hanging out and studying with friends, dating, etc.”
Moving toward higher quality friendships
While losing friends and taking COVID-19 precautions can be very lonely, the fear of being hurt again also makes it hard to make new friends.
Even with the feelings of betrayal, letting go of old friendships can be hard. Survey responses show that often people have not had a direct conversation or conflict with their friends, and it’s not clear if a friendship is actually over or if people are just less intimate with each other due to one person’s lack of interest in unmasked activities.
Sometimes people are reluctant to probe the loss of intimacy with their friends, fearing that discussing it openly will cause irreparable damage. At the same time, so much intimacy has been lost that perhaps that damage is already done. Herman said that although he “can’t see people in the same way anymore,” he hesitates to be more confrontational because “maybe this friendship could be salvageable in the future.”
Many say, though, that focusing on or finding new relationships where COVID-19 practices or at least values are aligned can lead to overall better relationships.
Among those who took our survey, 28% said that their friendships were “of an overall higher quality” now compared to before 2020.
A significant number of people (42.5%) also said that more of their friends are disabled. Disabled people have a long history of creating ways to survive interdependently, Abner said. Interdependence includes both practical support (like someone to go to the grocery store for someone who can’t) and emotional support (like not making someone feel like they are overreacting).
Disability justice theorist Mia Mingus uses the term “access intimacy” to explain the support that comes from having someone understand access needs on a deep, nonjudgmental, perhaps even automatic level.
That concept resonates for Jesi Taylor, a mom and freelance writer with Long COVID living in Brooklyn who has been disabled since 2005. Through being more intentional about friendships, she has ended up with more disabled friends.“Since we have similar experiences, we just understand what it takes to really care for each other,” she said. Focusing on these friendships has “really improved my quality of life.”
Find your people
A significant number of people are fighting this social isolation by organizing local community groups to connect people to each other and to COVID-19 resources. For example, one of the Safer Shared Air Collective’s goals is to create third spaces, like a series of gatherings in local parks, where people can just drop in and hang out. Finding things to do that are COVID-safer is also about challenging capitalist norms of what it looks like to spend time with friends.
Those with Long COVID or who are COVID-conscious can find folks with similar access needs and ideas about disability justice in similar local groups, on the site Covid Meetups, or on a variety of “still COVID-ing” groups on social media
It’s easy to settle for low-quality relationships with “the entire world telling you that you’re wrong, you’re dramatic,” said Amira Sturgeon of Safer Shared Air Collective. Belonging to the group has shown Sturgeon and others that “you don’t have to take that shit. … There are opportunities and experiences beyond that, that you can reach for and partake in and feel fulfilled by.”
“Just let them go,” is Taylor’s advice for friends that don’t share your values, “Let them grow in their own garden. Prune them from your spiritual tree.”
Herman adds that it’s okay if friends don’t observe all the exact same COVID-19 precautions. Differing precautions are inevitable in a world that makes staying safe extremely difficult. What is important is having friends who can happily observe any requested precautions for getting together in person, and with whom there is a shared trust and understanding of informed consent.
Abner encourages people having isolating experiences to get involved with the disability justice movement. “Link yourself up with disabled people,” she said, not only to make new friends, but also to gain new experiences and work toward collective justice that will benefit everyone.
Just let them go. Let them grow in their own garden. Prune them from your spiritual tree.
Jesi Taylor
October Krausch, Ph.D., is a public sociologist, activist, and writer in the Detroit metro area. Their writing has been published in Truthout, In These Times, Inside Higher Ed, and The Progressive, among others.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
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