Online and peer support

We asked people about their experiences of looking for and receiving peer support for their symptoms of Long Covid. Peer support is given and received when people with similar experiences draw on each other for help and advice. The benefits of peer support can include feeling understood by others with similar experiences and learning about things that have helped them. Here we report what people said about their experiences of online and in-person peer support.

This page covers:

  • Online peer support
  • In-person peer support

Online peer support

Because it was unusual for people to know others with Long Covid symptoms, especially in 2020 and early 2021, they tended to turn to online resources for advice and support from other people with Long Covid. The people we interviewed looked for peer support online to different degrees – some were very involved with online support groups, others dipped in and out of them, and some did not use them at all.

Claire described herself as “very active in the Long Covid community”. She set up a Facebook group, was an active campaigner and was involved in setting up the first global conference on Long Covid.

Ben is an active member of a Facebook group for people with Long Covid. He explains how ‘long haulers’ with Long Covid can give useful advice. He says it is important for online group administrators to check no ‘misinformation’ is posted.

Sophie joined a Long Covid support group on Facebook but only looked at it briefly now and again because some of the content made her more worried.

Tom hadn’t looked for peer support online. He tends not to join forums or discussion groups, but he does lots of Google searches to find information.

Robert didn’t look for peer support online because he didn’t feel he needed it, although he described his loss of taste and smell as a “big slap in the face.” Penny didn’t look for peer support online or spend time searching for information on Long Covid. She thinks she is less ill than some others are. She sees herself as someone with ‘lingering symptoms,’ but not as someone with Long Covid. Helen felt she was spending too much time on forums and when her counsellor suggested that she stop looking at them, she said this was “really good advice” for her. Judy didn’t want to “dwell on the negatives” and wanted to get away from a “cycle of worrying.”

Judy was not a participant on any forums and stopped looking at them because she found it upsetting. She also felt she was not as ill as some other people with Long Covid.

The people we interviewed had different opinions about how helpful online peer support had been for them. Fiona A, Kate and Jessica found some social media groups negative and not reassuring while others were “a real source of positivity” (Kate). Jennifer described online peer support as a “major life saver.” It meant she could talk to other people who could understand her experiences. She could hear about things that other people with Long Covid thought might have worked for them. She learnt about pacing through a Facebook group and went to see a breathing specialist that another group member recommended. Adele said her “mind was blown” by being in touch with people with the same symptoms as her who had suggestions on how to relieve them. Ben also felt he had benefitted from other people’s experience in the Facebook group that he had joined. He advised others with Long Covid to find an online peer support group that they can use as a “sounding board” or suggested asking a family member to join on their behalf if they didn’t have enough energy themselves because online groups can take up a lot of energy.

Jennifer said that online peer groups had been the best source of emotional support for her.

Adele found it reassuring to share experiences with people with similar symptoms through a Facebook group for doctors with Long Covid.

Ben said his Long Covid Facebook group had been a good source of information on how to manage different symptoms. He recommended joining a private Facebook group.

Michelle told us about how it helped her to meet, online through Teams (an interactive meeting computer programme), with a small group of people with Long Covid in her area. She said: “It was just nice that [they] were there and you could see them on the Teams screen, and I didn’t feel like I was the only person in the world with [Long Covid] anymore.”

In-person peer support

A few people told us about experiences of in-person peer support when they had met or had been put in touch with others with Long Covid. This happened to Michael when he met others with Long Covid while taking part in a research study. He said, “I think everyone had this almost disbelief they were speaking to somebody who understands what it’s like to not be able to sit in a chair for too long [and] all the awful stuff that comes with Long Covid. And they kind of believe you automatically [and] that was really nice.” Kate said that a “good outcome” of her Long Covid clinic appointment was meeting four other people with Long Covid. She had been keeping in touch with them online every week. Emily felt that the “best thing” her GP had done for her was put her in touch with someone local who also had Long Covid. She found this an extremely positive experience.

Emily found it very helpful to meet in person with someone with Long Covid. This helped her feel to feel less lonely and like someone else finally understood.