The Solace, Despair, and Disinformation of Long Covid Internet Communities

A conversation with communications scholar Katy Pearce

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Katy Pearce has what, for many, is a dream job as a tenured professor at the University Washington in the Department of Communications. Her wide-ranging research — on women in digital spaces in authoritarian regimes in the former Soviet Union, on performing “honor” online — is fascinating and provocative and impressive. She was also one of the first people I knew to get Covid, in those very, very early days of the pandemic. Soon after, she developed symptoms of what we now understand to be long Covid — but which, at the time, very few people understood as connected to Covid at all. It was bewildering.

As fellow academics know, when something is weird or unsettling or scary in your life, one of our first impulses is to, well, research the shit out of it — and then try to analyze it. So earlier this year, when Katy was describing to me some of what she was seeing in Long Covid forums online, I immediately asked her if she would be willing to share her initial observations.

Both Katy and I want to be clear: this is just the beginning of a larger research interest; it is not attempting to be or approximating anything close to a peer-reviewed analysis. But few people I know have been following this discourse from the start, from the inside, with the added positionality of someone who’s had to grappled with the information vacuum around long Covid themselves. And if you’ve experienced or are experiencing long Covid, or have been following the reporting on it, you know: few are taking the prospective ramifications seriously enough. (And if you’ve convinced yourself that long Covid is a mental hoax, I strongly recommend listening to this interview with Dr. Lekshmi Santhosh, the founder and medical director of UCSF’s long Covid clinic, who acknowledges all the ways in which other diseases can and have been mistaken for long Covid, and rampant misinterpretation of long Covid studies, and what is working — and how hard it has been for people to access that care).

For this interview, I wanted to think more broadly about what the explosion of these groups tells us about healthcare and social safety nets in America — and give a starting point to start grappling with what we need to do better now. I’m grateful to Dr. Pearce for taking the time to answer these questions, and if you have additional ones *about her observations, not about long Covid itself,* please do ask in the comments.

You can follow Katy Pearce on Twitter here.

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Can you tell us how you first became invested in Long Covid Facebook and Reddit Groups — what interests you, both personally and academically? 

My history with online communities is both personal and professional. My research is on technology and social media and interpersonal relationships in mediated environments — and while most of my work focuses on political and social authoritarian environments, online communities are a frequent site of my research. I just published a number of studies of young mothers groups in Azerbaijan and how revolutionary they are, for example. I’ve also personally been an active member of online communities since the early ‘90s — I even ran my own BBS back then — and in particular, health and parenting communities. (I think that my first online health community was for a rare-ish disease that my dog had in the early ‘00s on LiveJournal. And when I was in grad school in the mid ‘00s and was pregnant, I did an ethnography of birth stories on LiveJournal).   

Which is all to say that when I first had acute COVID in March 2020 and then developed long COVID, it was not surprising that I turned to online communities for informational and social support, just like I have for most other aspects of my life. And, like with other communities, I also cannot not look at them with a researcher’s eye.

Back in those early months of the pandemic, my primary care doctor had been blowing me off when I messaged her worried about my acute COVID symptoms. She continued to blow me off as I started developing “weird stuff” throughout the rest of 2020: things like a horrible rash after dying my hair or severe allergic reactions to sunscreen. I would ask if there might be any chance that any of these might be related to having acute COVID, and she always said no.

We moved at the end of 2020 and I ended up getting incredibly sick. I remember telling my primary care doctor “I think that our new house is killing me” and “I think that I am allergic to my new house” and again, she blew me off — same for urgent care providers and the nurse line. At this point, in late 2020, I had not heard about long COVID. But I was bed-bound for days at a time and in incredible pain.

Finally, in early 2021, I contacted my (Western-medicine-friendly) naturopathic doctor. She told me that all signs pointed to long COVID, but still ran blood tests, and made some suggestions about medication and dietary changes based on my symptoms. I found long COVID groups on Facebook and Reddit and was pleased to see that what my naturopath had suggested were exactly what people online in early 2021 were also hearing from their doctors — when they had access to them and those when those doctors were listening to them. I eventually got a referral to my local long COVID clinic.

But back in early 2021, while we all collectively waited for the vaccines to roll out, I was spending my days online, trying to sort through what others with long Covid were reporting had worked for them. Many people in the long COVID groups at that time were medical professionals and were pretty responsible in reporting what worked for them and not making medical recommendations to strangers on the Internet.  Moreover, I am very fortunate that I have access to medical journals and, because of my training, I am able to critically read research studies and understand statistics. Throughout my long COVID, these skills have not only helped me but also given me some cache, or authority, with various medical professionals. After reading studies on what others were trying, I’d then go to my naturopath and ask her to investigate the various supplements and medications with me. If something seemed promising, I would go on it and she would monitor me. 

Meanwhile, the vaccine arrived in spring of 2021. That summer was such a joy. People thought COVID was over and we were safe. I continued to be on my extremely restrictive diet and a suit of armor of medication, and watched as the long COVID online groups tapered off. It was just us unlucky people who got COVID in 2020, all doing the same things to try to function while we waited for a long COVID “cure.”

There were some people trying some more fringe treatments like Ivermectin, but in general, it was a nice group of people just trying to get by. People supported each other through suicide attempts, divorces, job loss, and feeling like they had been gaslit by their doctors. When the Delta variant long COVID people started showing up in these groups, many people, including myself, were quite judgmental — how could someone get acute COVID after the vaccine was available? The thinking was that if they got COVID after vaccines were available, it was their own fault. (I know it seems like a long time ago, but recall that there was a time in 2021 when people believed that the vaccine was entirely protective against COVID.)

It was around this time that the demographics of people who had both acute and long COVID began to change. People in these communities were both more willing to engage in fringe treatments and were less likely to have access to both medical care and knowledge. And then when Omicron hit in late 2021 — and it became clear that breakthrough infections were not only possible, but common — the number of people in long COVID communities exploded. It is also likely that as mainstream media coverage of long COVID increased, people in late 2021 understood that their weird new symptoms that first appeared weeks or months after acute COVID could be attributed to the virus — something that was not the case for us 2020 acute COVID people. Now these groups are full of people who had COVID in the past six months.

In the online Long Covid communities, what are the themes you’re seeing emerge? What feels like a continuation of other health/chronic disease/disability spaces, and what feels new or different?

The TL;DR: people are really suffering, and most don’t have the energy/bandwidth to push their medical providers to help them and/or they don’t have medical care (they don’t have a PCP [primary care provider]; don’t have insurance; don’t know how to get medical care; don’t understand how insurance works; doctors gaslit them….or the individual believes that illnesses just go away on their own). They’re turning to these online groups for advice, but because these groups are full of people that also don’t know what they’re doing, it is a hotbed for misinformation and the propagation of snake oil and sometimes risky behaviors. But these people have nowhere else to turn. So while long covid communities have much in common with other health communities and general online communities, there are few aspects that make them different.

I’ll unpack that a bit. People turn to online health communities for both informational and social support, and this is especially true when they’re not getting support in-person or locally. In general, the moderators/admins of online communities tend to be “graduates” in some way. But with long COVID, there are no “graduates,” which, in turn, means that these communities are harder to moderate. There also is less of a “commonly accepted truths” aspect to these communities than other online communities where over years, some truths have floated to the surface and community members enforce them.

Right now, there are so many people with long COVID. According to the CDC, one in thirteen people have had acute COVID. And one and five out of those have lingering symptoms. Other studies show an even broader range, and the differences can be chalked up to the challenges in defining what long COVID really is. Whatever number you choose — it’s a lot of people, and the impact on society in terms of disability is going to be huge.

And then there’s the demographics. There are many young “healthy” people with long COVID, and I’ve observed that they do not know how to manage their own medical care. They don’t tend to have primary care doctors; they don’t understand how their health insurance works; they often work on the assumption that they’ll just eventually get better like they would for a cold. There are a also lot of people who do not have access to decent health care, period, and are seeking medical advice online. 

With more young people experiencing long COVID, they are (often? sometimes?) more susceptible to misinformation and miracle cures. They’re desperate to feel better, and they don’t have any sort of medical literacy because they’ve never had to manage their own health. They often want a quick fix (but don’t understand why it is going to take a long time for a “cure” to be developed. One example I see frequently: a person doesn’t understand they (usually) need a referral from a primary care doctor to see a specialist, and that it can take months to get an appointment. Also: people who have little understanding of in-network vs. out-of-network providers.

Most chronic illness groups are predominantly made of women. You’ve told me that these groups include a lot of men — how does it change the dynamic? 

In the female-dominated groups (Facebook mostly, some WhatsApp), people are trying to cope. In the male-dominated groups (Reddit, Discord), people are looking for (quick) cures. And men can be assholes. (A lot of the men on Reddit are assholes.) Men want information rather than social/emotional support, which creates a really different dynamic than other health groups.

Interestingly, I’ve found on Reddit that men assume that I am male no matter what I write — and they’re often mean, in part, I think, because of this understanding that “men don’t get sick.” Men in general also have less experience with the bureaucracy of health care and being gaslit by medical professionals, so they’re shocked when they’re treated poorly and rarely have an established primary care doctor. In fact, I cannot think of one time that I’ve seen a man write that he had an established relationship with a doctor.

Older women (aka women over 30-35ish) in these groups are often still trying to “do it all.” They ask questions like “Any suggestions for pacing (staggered breaks during the day) when I also have to take kids to school, work a full time job, and cook dinner and clean the house?” You never see with men. 

How do you see members from countries without national healthcare interacting with countries that have robust national systems? 

In many of the English-speaking groups, there is a mix of British, Canadian, Australian, American and other English-speaking people. British people with long COVID seem to be getting “PIP,” which is a disability payment, and within the group, they often help each other with the forms and interviews for the process. By contrast, few Americans have been able to access SSD, aka Disability. Because Americans’ health insurance is typically tied to employment, they cannot quit their jobs.

You don’t see this everywhere, but in one of the FB Groups, you see Americans and British people (and occasionally Australians) butting heads. Americans are jealous that British people don’t have to be tied to their employer for health insurance, and that the UK seemed to take long COVID more seriously earlier, and that British people seem to get PIP without a fight. British people feel like Americans have better access to certain medications, particularly over the counter medications (for whatever reason, a lot of allergy drugs that work for long COVID are over the counter in the US), and that they have far better access to cheaper supplements (even if they’re questionable), and greater access to alternative treatments. A lot of the snake oil is sold in the US, so Americans have better access to it. With that said, there’s a probiotic that’s “hot” in the community right now and it’s only sold in the UK, so there’s some requests to mail it to the U.S.

There are posts from people in places with “less developed” health care systems and those are often really sad because people post about how they can’t access doctors that know about long COVID, can’t get access to recommended supplements, etc., and you see a lot of people from India and the Middle East in the FB groups in particular who have little access to, well, pretty much anything in terms of treatment.

I know there’s a lot of suicidal ideation in these spaces. How do moderators and members react to and deal with it — and is it any different than you’ve seen in other chronic illness spaces? 

I see a post directly or indirectly indicating suicidal ideations multiple times each day. I know that I personally report all of those posts to the platform, and I presume that others do too. I’ve never seen moderators do anything in the comments, but some of the groups do have a pinned post with suicide hotline numbers. A lot of people merely respond with direct informational support about things that the original poster mentioned in their post. Validation about the poster’s anger and experiences are common. Other users tend to write things like “Don’t give up hope. There will be a cure soon!” “You’re not alone.” People often will private message the poster to chat. 

I’ve never seen suicidal discussions like in other community groups — and in discussions with friends that study chronic health and caregiver groups, they’ve told me it isn’t so common there either. However, all of these responses from other community members exactly follow the online social support template. These groups are fairly poorly moderated — in part, I presume, because the moderators themselves are super fatigued.

If an alien were to spend a few days in these communities, what do you think they would extrapolate about, well, everything? 

These are people who are incredibly sick and were taken by complete surprise that it could be possible that they could be this sick. Many of these people, especially men, had no idea that being this sick would be isolating and they had erroneous assumptions about how the medical system works, how doctors would treat them (like they thought it would be like Dr. House solving the mystery plus the best possible concierge doctor service imaginable?), and at what speed. The shock of this sudden change in their life and the lack of resources/support that they’re getting is an awful thing to layer on top of being so sick.

Many of these people do not or cannot get the help that they need because they don’t have the time/money/knowledge/resources to do so. So they turn to each other for help, but it is a ship of fools, for lack of a better phrase. While some small things are helping, few in these groups are getting better. 

Right now, I am able to be stable at about 80% recovered. This is possible only through a lot of time, money, flexibility, strict adherence to medication, supplements, and diet, plus the fact that I live in a city with medical infrastructure and have a whole bunch of privilege (great health insurance + I’m a white/cis/het/upper middle class/PhD-holding-woman). Oh, and I have a spouse who does all the house and child stuff now. The vast majority of people just cannot do all of those things, or have access to all of those things.

Despite all of these people experiencing great suffering, the entire society around them seemingly does not believe that they themselves are likely to become sick — so they engage in risky behaviors. And governments and policymakers do not seem to see how having this many people being so sick is going to have a profound effect on everything in the near future. 

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I asked Katy for some resources for people who want to learn more about long Covid, about long Covid communities, and best practices for people trying to advocate for better long Covid care. Her recommendations are below.

• The basics, in terms of the the CDC long COVID guides, can be found here, here, here, and here.

• The Long Covid Alliance Advocacy Group Guide can be found here

• Here’s how to find a long COVID clinic near you

• In seeking care, some people turn to functional medicine specialist and/or naturopathic doctor who is open to Western Medicine, but it’s difficult to know who’s legitimate. This tool can help.

• A lot of detail about the ways in which anti-histamines have become key treatments for people with long COVID

• For advocacy and support groups, check out the Survivor Corps and Body Politic

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