Some people’s perspectives on long COVID
Researchers at Sheffield Hallam University in Sheffield, England, recruited people for interviews who were experiencing long COVID. Using a database and an algorithm, researchers randomly selected a sample of 18 people of different ages, genders and ethnicities and asked them about their experience with long COVID and how they dealt with physical activity.
Participants described a range of trajectories of illness. However, they all reported that long COVID was associated with debilitating fatigue, lasting weeks or months. One person described her experience as follows:
“The slightest thing was an effort in a way I’ve never ever conceived before, it’s the most fatigued I have ever been … things like changing my bedding, I did in stages like one pillowcase and then later in the day I’d do another pillowcase, it was that sort of level of difficulty with day-to-day tasks.”
Long COVID can encompass draining and disturbing physical and psychological symptoms, as another person stated:
“I do something physical, I suffer. If I walk, I suffer in my legs. If I do something with my hands, I suffer with my hands. If I start to think too much, I then get a foggy head. If I type an email on the computer and it goes on too long, I then can’t think enough to shut the computer down.”
Advice about physical activity
Health systems, doctors and nurses have been overwhelmed by the crisis nature of successive waves of the COVID-19 pandemic. This disease is new and, not surprisingly, many people reported being unable to get the advice they needed from healthcare providers or health systems. As a result, the researchers found that many participants had turned to online forums and social media. In general, this helped them to better understand their condition as other people with long COVID shared their experiences.
The trajectory of long COVID is unpredictable. Some people reported setbacks or relapse when they engaged in physical or cognitive activity. One woman stated:
“As much as I’m enjoying [walking the dog], it has the knock-on effect. But that is getting less and less, so the more I’m doing, the better I’m feeling afterwards. I think [relapses are] all part of it, just got to get on with it and push myself a little bit harder and then hopefully I’ll get better quicker. It doesn’t put me off.”
The importance of pacing oneself
Participants felt discouraged about engaging in physical activity because of their own symptoms or from reading about other people’s negative experiences online. They also found pacing themselves to be challenging.
The researchers stated: “Most participants established personal strategies for managing physical activity [PA] based on trial and error. All described a limited energy reserve that must be used wisely, planning their days according to personal schedule and priorities. Activities tended to be selected based on their benefit to well-being and/or responsibilities, for example, walking, getting outdoors and fulfilling caring duties.”
One person told the researchers the following:
“Everything that you read is pace yourself, pace yourself. But that’s really hard to do, because until you’ve overdone it you don’t know how much you can do without overdoing it, if you see what I mean, so learning by default. Which isn’t the best way, but I guess what’s enough for me might not be enough for somebody else.”
Many participants found the impact of long COVID to be what the researchers called “life-altering,” as the disability caused by the disorder was distressing. The researchers found that older participants used their pre-COVID-19 life experience to help them adjust, as one participant stated:
“I’m self-aware when it comes to my health and my mood and I think I’m just accepting of it rather than wanting to change it or be negative about it.”
Younger people without this experience seemed to struggle more with coping. One young person despaired, saying the following:
“I just want my life back, it’s getting a bit tedious. I see myself just becoming a burden, I don’t want to live my life like that.”
The researchers found that many participants were able to get support from friends and family: “While participants’ symptoms were severe and physical function was most disrupted, friends and family acted as informal carers, supporting self-care activities such as cooking. They also provided emotional support, although as with medical professionals, this was sometimes contingent on an understanding and awareness of long COVID that developed gradually. Over time, family and friends became important PA companions, often adjusting their own PA behaviour to match the level of the person with long COVID and providing a reassurance that fostered confidence in activities such as walking.”
Bear in mind
The researchers noted that their findings underscore the severe impact that long COVID can have on people’s energy and their ability to engage in routine daily activities (such as housework and child care).
The researchers also stated:
“Our findings indicate that people experiencing long COVID need better support to manage their symptoms, especially fatigue, while also helping them safely pursue the potential benefits of PA. As in previous research, 11 participants reported that guidance about PA was not always tailored to the complexity of long COVID. In particular, they lacked support on how to establish a baseline and upper threshold for activity which accommodated the erratic relapse–recovery cycle common to our participants’ experience. Our research suggests that pacing needs to be individualised, considering biographical factors such as life stage as well as current physical function and activity history. Many people will also require monitoring (either via professional or self-monitoring tools) to provide reassurance about the safety of PA while experiencing other symptoms like rapid heartbeat or breathlessness.”
—Sean R. Hosein
Humphreys H, Kilby L, Kudiersky N, et al. Long COVID and the role of physical activity: a qualitative study. BMJ Open. 2021 Mar 10;11(3):e047632.