Support From Family, Friends, and Communities

As participants in this study told us, living with long COVID can be physically debilitating and often left people feeling demoralized, anxious, and depressed. Having the support of family members, friends, and communities could make it easier for people to cope, yet people had different ideas about what it meant to be supportive. Well-intended gestures or suggestions could turn out to be unhelpful or inappropriate. Family members and friends could sometimes become less supportive over time. And not everyone had a strong network of support. The people we spoke with told us about the support, or lack of support, they had from family members, friends, and communities.

 

Support from family and friends

Some of the people we spoke with talked about how lucky they felt to have good personal support. As Victor put it, “What helps me … [is] the support of my friends … I can’t explain how important that is … and my family as well … they’ve been calling me every day.” Christine had to learn to ask for help but realized this was a good thing. “My son and my husband … are used to me being very independent and being able to do anything. I think they’re happy that I have to ask them to do stuff.” Ruth appreciates the fact that, “My family has supported me since the beginning … there’s so many people that cannot say that.” Elaine was grateful for her “amazing” husband, who now serves as caregiver, her daughter who “picks up groceries” and “takes her to appointments,” and friends who have brought over meals. Lesley describes her husband as “the king of men.” She explains, “Sometimes … I can’t get off of the couch … And he will do everything. He will re-organise his schedule to make sure that he does drop off and pick up and snacks and homework help, and whatever needs else to be done, running the business if I’m not up to it, as much as possible.” Chris described himself as “very, very fortunate have had good family support and … [a] partner [who] has not only supported me emotionally extremely well but … taken on so much.”

 

Support from communities

Several of our participants were connected to particular communities before the pandemic. Although these communities were not focussed on long COVID, they turned out to be valuable sources of support.

 

Small gestures of support can have a big impact

For many of our participants, small gestures of support could be very meaningful. Manali appreciated that her “10-year-old daughter will come to me with a cup of tea and honey because she knows that I’m tired.” Luna was thankful that her friends “will meet me for a walk and have always been very kind to go at the pace that I could go.” Angela was touched when she received a food package from Facebook friends she has never met in person. She explained, “The moderator for one of the Facebook groups got together with another girl and they sent me a food package … she ordered some soup and some croissants and stuff like that from a local shop here and sent them to my house. So yesterday I had food that I could just grab out of the fridge and eat without having to ask my husband to get me something or trying to stand at a counter and prepare it myself.”

 

Practical assistance with everyday tasks

Living with symptoms such as extreme fatigue, pain, and brain fog means that many people living with long COVID have difficulty with activities such as cooking, cleaning, or looking after children. As a result, many of the people we spoke with talked about how much it meant to have help with everyday tasks. Kristen appreciated her mother who “makes dinner for us a lot,” and will “watch the kids for us whenever we need it.” Ruth was grateful to friends who have asked, “Do you want me to help you clean? Do you want me to help you with your garden?”

 

Understanding you can’t attend social gatherings

One less obvious form of support, that was important to some of our participants, involved family and friends not pressuring them to attend social gatherings. While no one was expecting people living with long COVID to prepare food or help organize events, even attending and being around others in a stimulating environment, could be too much of a drain on their limited personal resources. Kari recounted discussions about gathering with the family for Christmas. “My kids are like, ‘Well you can come here.’ Well, I could, but I’m not going to say what kind of shape I’m going to be in. So they understand, but they don’t, so it’s difficult.”

Jennifer 2 had more success explaining to her extended family why she felt unable to attend an annual fishing weekend. “It’s been very difficult for me to learn to say, ‘No, thank you,’ but I think I’ve been able to do it because people were not reproaching me. Nobody said, ‘Oh come on, why can’t you?’ Everybody said … ‘Oh, you were so smart to miss it. We are dying in the rain, the cold.’”

 

Feeling under pressure to be well

Some of the people we spoke with described themselves as feeling under pressure to be well when family members or friends offered certain forms of encouragement. For Paulina, people saying, “Oh, you’ll get better … You’ll be fine, you’re fine” is a form of “toxic positivity,” a denial of her reality. Carrie 2 feels under pressure when she has a good day and people remark that she is looking better. She explained: “It’s hard because people want you to be well. So my father or friends will be like, ‘Oh you sound good today.’ And I want to be positive, but I also then feel pressured. ‘I need to be seeing more patients. I need to add more hours because I look good.’ But I know that that’s a recipe for disaster right now.” Kristen “feels most grateful for … the people who aren’t expecting me to get better. It sounds awful but I don’t want people to say, ‘Oh are you getting better?’ Because this is long – it’s better but it’s not better and that’s the frustrating part because I want to be all better.”

 

Support that fades over time

Long COVID is a chronic condition. Many of the people we spoke with noted that, while people were often initially supportive, that support could fade over time. As Lori explained, “I really try not to talk about it too much because I just think people get tired of it … Certain friends understand and certain ones I wouldn’t tell them … They can’t handle it, they don’t want to hear it.”  Cathy has had support from family and friends but still felt lonely and frustrated by their limited understanding. She said, “After this period of time I think people kind of feel like, ‘OK, you know, you’d better get back to normal.’ Well, wouldn’t I love that? Wouldn’t I love to feel normal?” Kristen found it hurtful when people say, “’Still? You’re still sick?’ Like, that would kind of eat away at me, because it almost made me feel like I was doing it on purpose. It was really difficult.”

 

Limited support

While some of the people we spoke with said they felt well supported by family and friends, many others did not. Sometimes this was because they had moved to a new location shortly before the pandemic and did not have an established social network. For example, Jennifer 1 moved to a new province shortly before the pandemic started. She told us “My only friend base right now … are my colleagues. I don’t have anyone outside my colleagues.” Jason was in a similar position. He explained, “I do have regular communication with friends back in BC and Toronto … other cities that I’ve lived in in the past. But I would say that … my support network that’s kind of there for me immediately, in my immediate vicinity when I’m not doing so well … is very limited … This is something that I have felt the need to manage on my own.”

Other participants found that family members and friends simply didn’t understand the condition. As Tanya put it, it was much easier to talk to another person living with long COVID, “as opposed to talking to … friends and family that mean well, but that just really cannot grasp how this actually feels, and how this affects you.” Or as Katherine explained: “I have a lovely family and friends who do support me in most aspects of my life. But … their capacity to understand what I’m experiencing is limited.” Nick found that “Other family members that have had COVID [and], have bounced back pretty fast” didn’t understand because they recovered. “I was fine, how come you are not fine?”