Seeking Information About Long COVID

Many of the people we spoke with had looked for information about their symptoms or about long COVID more generally. This included searching the internet, getting information from online support groups, and/or asking their healthcare providers. While the internet was the most common source of information, and was generally considered a valuable resource, it was also seen as a ‘rabbit hole’ that could lead to misinformation or excessive amounts of time spent reading negative information, (sometimes known as ‘doom scrolling’). For this reason, participants said they needed to exercise critical judgment about what they read.

 

Seeking affirmation and reassurance

Because long COVID has hundreds of possible symptoms, and our participants found that their healthcare providers did not always take them seriously, many turned to the internet for reassurance that what they were experiencing was real. As Jean put it, “At least I could explain this somehow … all the problems I was having … not just losing my mind. Not just imagining it you know?”

 

Information from online support groups

Online support groups were a key resource for participants wanting to know what other people were going through. Tanya explained the value of drawing on other people’s experiences in this way: “A lot of my information is coming from the groups that I eventually joined … These are real people that live in my surrounding communities, and within the province or within other parts of Canada … I suppose there’s some people that might discredit that because they themselves are not medical professionals, but they are the patients, and they are the people that are, like myself, looking in the mirror.”

But, while reading or hearing about other people’s experiences online could be valuable, it could also be disappointing or distressing. Luna was an early member of a prominent online support group. She found other people’s stories too alarming and not necessarily relevant to her experience. “I very quickly couldn’t watch it anymore … the horrible stories … That person has a heart injury from a virus but they were hospitalized for it. That person … had recovery from ventilation. That’s different from what me and the other people in this situation are going through … Where am I? Does it matter that I can’t work and that I can’t think and that I can’t wake up in the morning? Obviously it doesn’t matter to the world.”

 

Seeking information about treatments

Several participants sourced information about possible treatments by scrolling through comments on websites. As Hollie explained, “I usually go by how many people will comment, and they’ll say, ‘Oh, this worked for me,’ or they say ‘Oh, this didn’t work for me.’ So if a lot of people say this didn’t work for me, I forget about it … And then if, in time, it does start to help people, then I’m like, “OK, I’ll maybe try this.” Others found they were able to use some of the information they found online to inform conversations with healthcare providers.

 

Thinking critically about what you read

Many participants were skeptical about much of what they read online and worried the information was unreliable. Paulina preferred to “focus on facts and science and my doctor” because she was confronted with so much “new agey” advice such as “Look for the light and just believe,” or take the “controversial veterinary products.” But, while many acknowledged the importance of exercising critical judgment about the information they found online, this could be challenging.

 

Deciding what is reliable information

Given the ever-increasing volume of information about long COVID, participants had to find ways of deciding what to believe. Some people looked for information on websites linked to government or to well-known scientific and medical institutions. Others searched on Google Scholar for peer-reviewed papers that they could read themselves rather than rely on second-hand information. Several people mentioned that online support groups provided links to scientific studies as they became available and relied on those to learn about new developments. It was also common for people to ask their trusted healthcare providers directly for information or to help them decide whether something they had read could be believed.

Participants often used more than one approach to decide whether information could be believed. For example, Kristen describes herself as “a big fan of credible websites, like the government websites, and that’s really where I would seek the information.” But she would also “talk to my cousin who is a nurse practitioner and say, ‘Do you have any information on this?’”