Online Support Groups for People Living with Long COVID

Online support groups were an important resource for some of the people we spoke with. These groups helped people connect with others living with long COVID, and provided reassurance that they were not imagining their symptoms. That said, our participants also often described online support groups as “double-edged swords” meaning they had both good and bad sides. Many explained how they engaged with online groups selectively in order to benefit where they could while protecting themselves from misinformation or emotional harm.

 

Avoiding long COVID online support groups

Some of the people we spoke with had chosen to avoid online support groups. Some were too exhausted or couldn’t look at screens. Others, like Carrie 2, who is a family physician, said it was just too time-consuming. Maggie wanted to preserve her energy and explained, “I need to find ways to deal with my situation and I didn’t want to get into groups … that are venting … I wanted productive conversations and to find solutions.” Aislene preferred to engage with other kinds of online groups, because, she said, “I don’t want to think about the fact that I have COVID, I’m dealing with it every day. I prefer to go to the group about the book that I love.”

A couple of participants were concerned about social inequity in online groups. They avoided them because they felt there was often a lack of sensitivity to differences in experiences based on income and people’s sense of identity.

 

Connection and reassurance

Participants who chose to engage with online support groups often said they felt isolated and frustrated by the fact that healthcare providers did not take their symptoms seriously. Connecting with others online provided reassurance and a sense of connection at a difficult time. As Anna put it, “The only real support that you can get in this world right now … is the long COVID groups on Facebook … People outside cannot really understand, not my family, not my friends, not everybody who is not in it. And the only people who are in it are actually understanding how unreal this situation truly is for us.” Nicole’s reason for joining an online support group was easy to understand: “Because it is very scary when you go to see your doctor and you’re dismissed and you’re told it’s all in your head.” Ruth spoke of the friendships she had made with people in her online group. “We’re each other’s lifelines for bad days” she said. While Cathy, described her support groups as “an absolute godsend because you find out you’re not alone.”

People who were infected with COVID-19 early in the pandemic, were often especially enthusiastic about online support groups because there was so little recognition of the condition at the time. As Louise put it, “That took away … the mental side of it, of having doctors tell you that there was nothing wrong with you when you felt completely crappy. And that people in France were having the same thing happening and people in New York were having the same thing happening …”

 

Sharing information about tests and treatments

One important aspect of online support communities was sharing information about tests and possible treatments for long COVID. Cher found out about a specialist clinic through her online group. William found it “nice to discuss things with likeminded people especially in terms of treatments.” George got suggestions about specific tests he could ask his doctor for. He explained, “It was like “They’re going to order blood work. They’re probably not going to put this test on there. Ask them to add that test … Here’s exactly what you should ask for and why … The advice was really, really spot-on and very specific.”  For Lyse, online groups provided alerts about potentially inappropriate treatments: « Comme exemple, les ergothérapeutes, les physio, mais eux, ils ont une façon de travailler qui n’est pas nécessairement bonne pour nous. Ils vont nous faire faire des petits exercices, mais à la fin, on est plus magané qu’avant l’exercice. Fait que ce n’est pas l’idéal. » [For example, occupational therapists, physios, they have a way of working that’s not necessarily good for us. They’ll make us do little exercises, but in the end, we’re worse than before the exercise. So it’s not ideal.] Translation from the original French.

 

A double-edged sword

While online support groups filled a need for many of the people we spoke with, they also had their negative sides. Participants told us about parts of their online experience that they found challenging or distressing. 

One of the most common problems our participants experienced with online support groups was sensationalism and extreme negativity. This sometimes involved people sharing graphic details of their symptoms. For example, Hollie disliked it when people posted videos of their heart rates going up, or their blood pressure going up.  She said, “I don’t like that, because it does cause my heart rate to go up because I get nervous and anxious, because I know what it feels like. And then you end up in the emergency room, and I would like to avoid that.” 

Other participants talked about people online who shared feelings of extreme hopelessness, suicidal thoughts, or their desire for medical assistance in dying. This was especially difficult for those who were trying to maintain a positive outlook or who felt they were showing signs of improvement, however small. As Lori put it, “It was overwhelming, the sadness of it all, the sadness of it and for a lot of people the hopelessness of it. I still have hope [laughs] that it will get better … I’m a very, very optimistic person but for a lot of people it’s hopelessness and it’s hard to hear.” Kristen “felt this doom and gloom feeling when I would be on those groups. Like, if there’s this growing group of people feeling this way for this long, am I ever going to get better? So, I did take a step back at one point.” Cher was concerned about the amount of “suicidal ideation” being expressed in one group because she felt, “Hey, I could see where that would be me. If I get to that point where I’m losing my cognitive function all the time, and I’m not able to get back to feeling like me, I wouldn’t want to stick around either.”

 

Need for moderation of online support groups

Several of the people we spoke with expressed concern about the content of online groups, especially with regard to conspiracy theories, anti-vaccination sentiment and unproven treatments for long COVID. Paulina had been enjoying the support she got from one group but, eventually left because it was politicized and overtaken by “keyboard warriors.” Christine stressed the importance of finding an online group “that’s moderated and … finding one that has a moderator … who aligns with your own beliefs and philosophies.”