Long Covid symptoms
Nearly all (92 per cent) of respondents who told us that they had Long Covid said they were currently experiencing symptoms. The most common symptom was fatigue with over nine in ten (96 per cent) respondents stating they had experienced this. The other most common symptoms were cognitive dysfunction – difficulty with thinking and concentration (84 per cent), shortness of breath or difficulty breathing (73 per cent), difficulty sleeping (65 per cent), cognitive dysfunction – memory loss (63 per cent), fast-beating or pounding heart (60 per cent), dizziness (57 per cent) and digestive problems (53 per cent).
Over half of respondents reported pain related symptoms including muscle pain (60 per cent), headaches (60 per cent), joint pain (58 per cent) and chest pain (50 per cent). Additionally, a significant number reported mental distress with half (50 per cent) reporting symptoms of anxiety, four in 10 (40 per cent) changes to their mood and over a third (37 per cent) depression.
A significant minority of respondents also said they had experienced pins and needles (44 per cent), tinnitus or earaches (41 per cent), a cough (38 per cent), sore throats (36 per cent), loss of problems with smell (34 per cent) and taste (30 per cent), dermatologic symptoms (31 per cent), problems with vision or eye health (30 per cent), higher temperature or intermittent fever (25 per cent).
Over two in 10 (23 per cent) respondents said they experienced lung function abnormalities, one in 10 (11 per cent) had experienced inflation of the heart muscles and just under one in 30 (2.5 per cent) had experienced acute kidney injury.
A quarter (25 per cent) of women and non-binary respondents reported that they had experienced changes to their menstruation. Graph II demonstrates the different symptoms experienced.
Respondents could select as many of the listed symptoms as was relevant to their experience of Long Covid. On average each respondent reported having 13 of the 29 Long Covid symptoms we asked about and described the severity of their cumulative impact.
This report focuses on the impact of work and therefore we will not provide a narrative of why people experience different symptoms or the pathology of Long Covid. However, collecting data on the symptoms contributes to the literature of people with Long Covid having a key role in identifying and defining what Long Covid is and how they experience it. It also highlights that people with Long Covid will need different support from their employer depending on the symptoms they are experiencing, highlighting the importance of believing and listening to the person.
Over nine in 10 (93 per cent) respondents also stated that their symptoms varied over time, for example they were worse on some days in comparison to others or affected them for part of the day. In the comments, many respondents stated that this was not well understood by their employer
“The fluctuating and relapsing/remitting nature of Long Covid was not accommodated well. Once I'd had my phased return that was it, I was expected to be well enough to work at full capacity.” Woman 46–55 Health and social care
“Long Covid is not linear. I was trying to overdo in my good days to compensate for the bad ones but it backfired. My director changed and he just used that fluctuation in performance to make me redundant.” Woman, 36–45, IT, communications, media and publishing
Additionally, over eight in 10 respondents (86 per cent) said they experienced post exertional malaise. This is the worsening of symptoms following physical or mental activity, which can mean that people have to limit their activities and need additional rest periods. Again, employer support needs to take these experiences into account.
Respondents also told us how long they had been experiencing symptoms for and the impact their symptoms had on their ability to carry out day to day activities.
The most common length of time that respondents had been experiencing symptoms was over 24 months (29 per cent of respondents), followed by 7 to 12 months (23 per cent). In our survey in April and May 2021, the most common length of time was 3 to 6 months (35 per cent).
Overall, 60 per cent of respondents said they had been experiencing symptoms for over a year. This compares to 29 per cent in 2021.
Six in 10 respondents (63 per cent) told us that their ability to carry out normal day to day activities had been limited a lot and a further third (33 per cent) reported that their ability to carry out day to day activities had been limited to some extent.
Whether each person meets the Equality Act 2010 definition of disability would need to be based on the experiences of that individual, however, four in ten of all respondents reported both that their symptoms had lasted for 13 months or more and their ability to carry out normal day to day activities had been limited a lot. This suggests that many who responded to our survey would meet the required definition under the Equality Act 2010, meaning that if they had been denied reasonable adjustments, their employer could potentially be acting unlawfully.
There is evidence that the workplace has been a significant site of transmission. Half of respondents (49 per cent) to the survey said they had reason to believe they had contracted Covid-19 at work.
Almost two thirds (64 per cent) of all respondents identified as key workers, and of that group, six in 10 (61 per cent) had reason to believe that they contracted Covid-19 whilst at work. Several respondents described contracting Covid-19 at work, with some describing the inadequate safety measures which they felt had led to transmission and the additional layer of injustice that doing their job has led to the situation they are in.
“I am a secondary school teacher… I know I contracted Covid at work despite my own adherence to protections. I taught in a very crowded, poorly ventilated classroom. I love my job and don’t want to be off. Because I’d only been in the post for a year, I got one month full pay and one month half pay. It feels really unfair. I’m in this situation because I did my job.” Woman, 46–55, education
“I caught Covid in March 20 and think I caught it from the hospital I work at as later found out there was an outbreak of Covid and we had no PPE. I believe [employer] failed to protect me and failed in their duty of care as a vulnerable member of staff at high risk of Covid complications which I have suffered and am still severely unwell 31 months on.” Woman, 36–45, Health and social care
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