Published in The British Medical Journal - 9th March 2021

Participants

Eighteen people took part in an interview (see table 2 for sample characteristics).

Table 2

Participant characteristics

Four themes were identified: the interconnection of physical and psychological symptoms; lack of clear and consistent PA-related advice; learning to balance symptoms and activity; and adapting to an altered life. Themes are described below with illustrative participant quotes.

Interconnection of physical and psychological symptoms

Participants recounted their experiences of long COVID in detail, describing diverse individual illness trajectories and varied patterns of symptoms presenting throughout the body. All participants described significant debilitation, with their physical function drastically reduced. This meant several weeks, and in many cases months, of being virtually housebound. During this period, basic activities of daily living (ADLs) including self-care and housework became challenging or impossible, and formal exercise was unconceivable:

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. (IV2)

It has affected me to the point of like debilitating … I’ve had to contact the school and say I can’t do the one-way system to drop off. So literally I drop my son off right outside the school so I don’t have to walk the 10 minutes’ walk around the one-way system. I can’t do that. (IV7)

The combination of physical and cognitive symptoms added to an overall sense of debilitation:

So if 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. (IV5)

Physical and psychological impacts of long COVID were interlinked. For some participants, prolonged and unexpected physical incapacitation had emotional implications, including lowered self-esteem, frustration and guilt about not being able to fulfil everyday responsibilities. Some participants believed that stress was a specific trigger for physical symptoms:

I’m the wrong generation to just not go to work. So I know I couldn’t go to work but I felt guilty about not going to work … once I knew every week that I had to be in touch I’d get really anxious because I knew I couldn’t string a sentence together or even send a proper email. (IV14)

You see, stress brings it on and that makes it really bad. (IV13)

Lack of clear and consistent PA-related advice

Participants had varied expectations of how the healthcare system could support them with PA. Some were deterred from help-seeking by unhelpful responses or a perception that they did not meet the threshold for help. Others acknowledged the constraints facing clinicians, yet felt compelled to seek advice about unnerving symptoms. Questions about how to manage PA challenged the expertise of medical professionals, who lacked an evidence base for this novel condition and were unable to provide conclusive advice. Consequently, participants sought information and validation online. Social media forums provided a community that normalised the long COVID experience and provided coping strategies. In addition, most participants adopted a ‘researcher’ role, reading scientific articles and health resources to better understand their condition:

I think the GP that I’ve managed to speak to has been trying his best, but he is a little bit unsure himself you see …. the most things that have been useful are the support groups on Facebook, I hate to say it but that’s where I’ve found most of my information. And then obviously I’ve been reading a lot of evidence papers as well. So I’ve been … trying to form my own opinion and diagnosing myself. (IV18)

As a consequence, professional advice about PA often arrived after information had already been accessed online:

They [physiotherapist] offered loads of advice just about pacing really. But I think at that point because of all the communities that have sprung up everywhere online people had already been sharing this information. (IV3)

While information accessed online was broadly helpful, it lacked specificity for long COVID:

There’s obviously people that have had … different types of viruses, and they’re all claiming that doing exercise and whatnot is harmful for your recovery. I’m not sure if you’ve heard of something called ME, a lot of people are stating … don’t do graded exercise … don’t do none of that … (IV4)

Some participants also struggled with digesting online information, finding long periods of concentration difficult. One participant highlighted the challenges associated with critically appraising evidence:

… I don’t really have any knowledge of just medical sciences or have the ability to just go and start reading the journals of the latest publications … the common person can’t do that. (IV12).

Learning how to balance symptoms and activity

Participants described a loss of freedom to engage with routine activities; any physical or cognitive activity resulted in the onset of fatigue. Some participants considered these relapses worthwhile, either because with each relapse followed a small perceived improvement in baseline function or because it was considered a price worth paying for the sense of normality, control and positive affect the activity provided:

So 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. (IV17)

Some participants were deterred from PA by seeing others with long COVID experience a symptom relapse. The severity and unpredictability of their own symptoms caused others to fear potential adverse events, along with the absence of any guarantee that permanent damage would not be caused by PA:

I read about pacing and I haven’t tested myself, so I’m not exercising and I think that’s a big thing for me … So when I’m reading other people saying they get tired when they exercise, maybe that’s put me off from trying that. Maybe it’s the fear of not knowing. (IV9)

… I’ve always been one of those people that thinks well, you know, you push through it …. But this you just can’t. And this is something that I’m becoming more afraid of that I think maybe I need to properly back off from as much daily activity as I can to recover from this because I’m scared that I will eventually end up as probably a 50% to a 60% of what I was previously, permanently, or for a longer term. (IV5)

Participants were especially discouraged from PA by symptoms such as breathlessness and heart palpitations. Where medical advice was sought or provided, this tended to err on the side of caution and thus reinforced decisions to avoid PA:

My heart rate being high is a worry. I do experience chest pain and constant tightness on my chest, which again is a worry. And I’ve never felt as if I could really push myself … And my doctor has said … well don’t push it, you may do more harm than good by pushing too much. Which again doesn’t help me an awful lot … (IV1)

Most participants established personal strategies for managing 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:

I have to try and think well if I need to be around to look after my kids or something in particular in a day I need to be very, very careful of what I do the day before. (IV5)

I do the physical things that look after my mental health. So going outside and getting some fresh air looks after my mental health, and it in doing so helps the other symptoms, if that makes sense. So I focus on those a lot. So on a sunny day I’ll go outside, because blue skies do me the world of good. (IV7)

This process of pacing and energy conservation was not without challenges. Many participants expressed a desire for better monitoring and support to manage PA, and bespoke long COVID guidance for establishing a safe, consistent baseline for activity:

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. (IV8)

… what I found with the advice for chronic fatigue syndrome is there seems to be, I don’t know, I’m kind of just assuming this and making it up but it seems that there’s more of a standard pattern; whereas with this it seems that no two days are alike so it’s really hard to find a baseline because it’s so erratic. (IV3)

Adapting to an altered life

There is a clear sense that long COVID is experienced as life-altering. Many participants described a loss of ‘self’ and a substantial impact on their identity. Some participants made sense of this as a ‘pre-COVID-19’ and ‘post-COVID-19’ life, and others described it as a journey. While the prospect of permanent disablement was distressing for all, many older participants drew on life events such as previous illness to make sense of their current experience:

… 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. (IV13)

In contrast, younger participants (eg, those aged 18–24 years) struggled with their reduced function:

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. (IV4)

The majority of participants had been unable to resume activities that were previously central to their core identity (eg, a parent, an employee). Any activity that provided a sense of normality thus helped to refute the idea that this changed identity was permanent (a prognosis that was both feared and resisted). Participants for whom PA was a core feature of their self-concept previously referred to this as a strong motivator in their desire to improve functional capacity and resume PA:

I’ve been a runner and then a cyclist for many years so I had the intent of getting back in the walking. And then as soon as I could I got back in the cycling a little bit. (IV6)

I’ve always been physically active … So it was somewhat testing myself, somewhat being hard headed and driven and also hoping that I’m actually fine, it’s all over now and I can get back to playing basketball soon … (IV15)

Some participants had reached a point of ‘reluctant acceptance’, not necessarily arrived at peacefully but through exasperation and for some, a degree of self-defeat. Participants described needing to give themselves permission (or seeking it from others) to rest, and some described a shift in priorities:

I’m just desperate to get back to exercise but I’ve had to learn that I can’t, and a lot of mindfulness and patience and… the supportive people around me just helping basically, just listening. (IV3)

… I feel there’s an opportunity for change. I might reduce my hours going forward. It’s difficult but I might try and balance my work-life balance a bit more and pace myself. (IV9)

Family and friends played a significant role in participants’ ‘journeys’. 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:

I started going out every day and trying to do a bit more of a walk at home where it was relatively safe, my mum was there, she would walk with me and look after me. (IV11)

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