5 factors impacting the mental health and wellbeing of people with Long Covid

We last spoke to Dr Alex Burton, a Senior Research Fellow in the Department of Behavioural Science and Health at University College London (UCL), in July about the social impact of the Covid-19 pandemic on people’s mental health and wellbeing. Dr Burton and a team at UCL were researching the topic as part of UCL’s Covid-19 Social Study which aims to assess the psychological and social impact of the pandemic on groups within the UK following the coronavirus outbreak. Their work on this study, which began in March 2020, is ongoing. We followed up with Dr Burton to find out about her recent work which explores how people with Long Covid have been affected during this time – particularly how the experience of Long Covid has impacted their mental health and wellbeing.

The study was conducted through qualitative research interviews with 21 participants who were experiencing Covid symptoms or tested positive for the virus, and of whom had experienced Long Covid symptoms for more than three weeks following their illness. Following an analysis of their responses, Dr Burton and her team found five recurring themes across all participant accounts:

  1. Experiences of care and understanding from others. Participants felt lonely when their friends, family and healthcare professionals were unsupportive of their Long Covid experience. Dr Burton says, “There was a lot of acknowledgment that we don't really know how to treat this, and we don't know what's going to be effective. But just having a health professional listen to somebody's story and empathize with what they were going through was really important for their mental health and wellbeing.”

  2. Lack of service and treatment options. This left participants feeling frustrated and anxious. Some reported having tests done to try to diagnose the issue but because the virus and its effects were new and unknown, the results had no definitive outcome. Dr Burton talks about people “feeling a little bit in limbo with what they could be doing to support their symptoms during this time.”

  3. Severe disruption to daily life. Long Covid affected participants work lives, home lives and social lives in an extreme way which in turn impacted their mental health. “For some people, just showering and brushing their teeth was really tiring. People talked about withdrawing and not really wanting to talk to people about how they were feeling because they felt like they were a burden on other people.”

  4. Uncertainty about the longevity of Long Covid. Respondents felt unsettled in not knowing how this illness would affect them day-to-day as well as in the future. Worries included “not being able to return to work and reengage with activities that normally might protect your mental health such as physical activity or socialising.”

  5. Impact on self-identity. The way that Long Covid changed people’s social roles and sense of identity was upsetting to come to terms with. Some participants who were previously “physically fit and active now felt weak, less confident and lost as a result of their Long Covid symptoms.” They worried about “whether they were still able to be parents, partners, employees” in the same way they had before becoming ill, which had a real impact on their wellbeing.

Reflecting on these findings, Dr Burton said, “The changes for some people were quite huge: going from full time busy jobs to not being able to work; or being very physically fit and active to no longer being able to have a shower without feeling exhausted, was really surprising and really harrowing sometimes to hear.” She commends the strength of participants in dealing with Long Covid when it is still a new and unknown condition. “People's resilience came through and I think when they were faced with this uncertainty, they still had hope that they would recover or at least have a better functioning, better quality of life.” She said, “A lot of that came back to feeling supported by health professionals, friends and families. And also having been supported by their employers to work up flexible arrangements.”

That doesn’t mean that participants weren’t unsettled by the novelty of their condition. They wondered, “Why is this happening to me? Why are other people not getting Covid or only experiencing mild symptoms? Why have I not been able to recover?” While experiences of Long Covid also differed among those with symptoms making it even more difficult for themselves and others to understand.  

One participant in the study told of an upsetting experience with a friend who visibly stepped away from them when they mentioned they hadn't fully recovered from Covid. Dr Burton explains this is an example of the stigma attached to Long Covid due to a lack of understanding that the participant was no longer infectious.

Dr Burton believes that the role we play in supporting the mental health and wellbeing of others is essential for this reason. She says, “if you're a friend or a relative of someone experiencing Long Covid, just offering or providing practical support e.g., do people have what they need? If they need any shopping brought in because they might not want to or be able to go out, providing empathy – just listening to people is key!”

A final follow up survey for UCL's Covid-19 Social Study will take place in March 2022 with data collection and analysis of interviews continuing in the meantime. They are also conducting fieldwork until the end of this year with vulnerable groups including women who’ve experienced domestic abuse during the pandemic and the service providers who have supported them. Next year, work will shift towards finalising analyses and publishing the results. Dr Burton says, “I think first and foremost, we want to tell our participants what we found and share the study findings with them. But then [we need to] think about how we inform service provision and mental health policy, so that we can really start to implement some of the lessons we've learned about how best to support people's mental health and wellbeing during periods of crisis and uncertainty.”

  • Thanks to Dr Alex Burton for her contributions to this episode of Covid Matters. You can listen to the full episode on your favourite podcast platform, or find our last episode with Dr Burton, here.

  • Read more about UCL’s Covid-19 Social Study at www.covidsocialstudy.org where you can find information on how to get involved or read reports including the study discussed in this episode (linked here).

  • If you would like support on your Long Covid experience, please join the covid:aid Covid-19 Support Community where you can chat and connect with others.

  • Photo by Nadine Shaabana on Unsplash

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