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Covid-19 in the community

Long term impact of Covid and persistent symptoms

This section explores the longer-term impact of Covid on people that we spoke to. Initial Covid infection has been found to cause persistent symptoms in some individuals, which can last months after their initial infection. These persistent symptoms can include fatigue, brain fog, loss of taste and smell and breathing issue and can affect people’s everyday lives. This topic is split into the following sections:

  • Regaining previous level of health 
  • The mental health impact of Covid 
  • Lack of visibility and understanding  

Regaining previous level of health 

Experiencing persistent symptoms often meant that people we spoke to were unable to resume aspects of their life that they had enjoyed. People often used comparisons between pre and post Covid health levels to explain changes to their health.
 

 

Laurie describes the impact of Long Covid on her body and her mind.

Laurie describes the impact of Long Covid on her body and her mind.

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I walk everywhere. I’m a 10,000 step a day woman, I can you know [laughs], I really had to and this walk, which would have been easily manageable, 20 minutes down 20 minutes back for me, was almost you know, I just, I collapsed into bed after that and I thought ‘oh, this isn’t good.’ And then just right the way through the Summer, random things kept going on, and I stopped being able to drink alcohol, I couldn’t concentrate. The worst thing for me, although the physical symptoms were annoying, the worst thing for me was that my cognitive abilities just didn’t seem to be coming back, and cognitive work absolutely exhausted me. I think the things that I was experiencing, the things that I was left with after the fevers stopped spiking were breathlessness, tachycardia, and… yeah, the brain fog the brain fog, the cognitive impairment was just, was really, really distressing to me as an academic, as a writer, thinker, supervisor, whatever.

 

Many days Sam Z felt ‘almost normal’, but on some others he could hardly move.

Many days Sam Z felt ‘almost normal’, but on some others he could hardly move.

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A weird, bizarre illness I’ve ever had. Well, I’ve never really had a proper illness like Covid. It’s such a bizarre thing. On many days, I feel like I’m almost normal like or close to normal. But I still know that I can’t go further than, I can’t, I still just very conscious to not push myself. You can sit talking to your friends and feel almost completely normal and feel switched on. It’s just so bizarre going from being like that to not wanting to talk at all and not being able to move. So, yeah, it’s quite a lot to put your head around.


 
Long term symptoms such as fatigue, breathlessness and loss of taste and smell prevented people from returning to jobs, taking part in physical activities, and eating certain foods, as they no longer could taste them. Lyn and Cindy expressed this as a feeling of loss that they no longer possessed the level of health they did before having Covid.
 
 

Lyn experienced grief over no longer being able to do the job she loves because of her Long Covid symptoms.

Lyn experienced grief over no longer being able to do the job she loves because of her Long Covid symptoms.

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I’m a Buddhist, it helps me as well because the nun, we call them Maechi talks to me and helps me to cope with my illness and also, when you some religion, a positive enabler we each have non-judgmental. It helps because you don’t fear you’re judged and also not feeling that you are alone. Because when I got sick, Kübler-Ross or psycho Kübler-Ross of grief, stages of grief so there’s no one point that you are stuck in one. You always have different angles where you are at. When I got sick, I was not, I couldn’t acceptance. Acceptance was really difficult for me. I have the feeling of abandonment and grieving also because I love my job so much. I love working in mental health, right, and that makes it difficult for me because I didn’t, couldn’t, because abandonment because not getting the support that I want and also because of the gas lighting, those things in my head doesn’t help. That’s when you have your anger and then you say, “Why me? Why me? Why, I done so many good things, why is that I’m having this? What have I done wrong?” And that goes up in different level cycle and allowing myself to grieve and to accept. That is one thing that is important. They say to me, “I’m going to send you, there’s something wrong with you.” And they send mental health nurse talk to me but, in the end, the mental health nurse said to me, “You know what? I think you know more about this than me. You’re not a looney.” [laughs].“Yes, you’re going through some things but you don’t need medication or you’re not a looney, you don’t need to be, you know, you are right to feel those things.” And that’s why it’s important to have acknowledgement from people that it’s all right to not be all right.


 
This change in lifestyle was very distressing for many of people we interviewed. Mahabuba said “It’s ongoing, like more pain going on, more tiredness, and I still don’t feel like you know, like what I can do what I enjoyed before.” Not being able to resume physical activities was a big impact that people told us about. Goutam previously ran and played badminton. Although he has been able to start walking again, he is unsure if he will be able to play badminton again due to his breathlessness. His other persistent symptoms include brain fog and lack of taste and smell, which has taken his enjoyment of food and drinks away.
 
 

Goutam’s Long Covid symptoms have prevented him from enjoying physical activities and food he used to enjoy.

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Goutam’s Long Covid symptoms have prevented him from enjoying physical activities and food he used to enjoy.

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I think physically there are certain things which has impacted me long term wise like, you know, I had went to the heart check-ups and you know, there is blockage on one of the ventricles. So I started getting medicines like, you know, the starting all this like medicine and regular, this is I never used to have, so that’s one thing. Breathlessness I still have to like you know… couldn’t run that like, you know, I was gasping for oxygen after 15 minutes. So, hey phoned the doctor and they said like don’t, don’t talked about going back to run. So, I’m still walking a lot now so instead of doing a bit of brisk walking and…. and I haven’t played any badminton yet so I don’t know whether I could like play as I used to play or I’d struggle, so I’ll see how that goes. 
 
I can’t remember things very easily. But now I think like, you know, that might, something might have changed in you in, in the process of memory, you tend to forget a few things which I never used to do beforehand. 
 
Some the taste and the smell, I still haven’t got any sense of smell it’s been over a year now. I still can’t smell like, you know, the strong perfume I very, very rarely can smell it now and, you know, I used to love the smell of coffee, that’s the first thing when I go to work I love the smell of coffee but I can’t smell it. And yeah so that, that’s one thing I’m missing but luckily like, you know, one other thing like when I came back home I couldn’t taste any food which was a big, I just love food but I couldn’t taste anything a very long period of time. Like, you know, was ten months or over I could hardly see, like, you know, how a cup of tea or a cup of coffee taste like. You know, it was very metallic it was very like your mouth is very, very different just, you just can’t feel it like, you know. So that, that, that was very hard at the time, but luckily the, the taste is back now I can feel like most of the taste now which is good. But smell was, yeah.
 
But you can finally taste?
 
Yeah, yeah I remember like when the hospital, when I left there the first thing I wanted like what’s the first thing you want to do, and all I said like really need a curry and rice that’s all I really need a chicken curry and rice that would make me really, really happy and the first thing hah.

 


 
Due to her persistent symptoms, Esther is no longer able to play football for as long as she used to. In order to still find enjoyment from football she now plays the position of goalie when she no longer has the energy to play other positions.
 
 

Esther has adapted how she plays football so she can still enjoy the sport, despite her persistent symptoms.

Esther has adapted how she plays football so she can still enjoy the sport, despite her persistent symptoms.

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Yeah. Well I mean, yeah, like kind of, but I actually think, you know, I’ve managed to work around it a little bit. Like, you know, I played football once a week or at least I did, previously. And now, I just play in goal [laughs]. You know, and so I’ll maybe have like a couple of minutes of playing out and you know, playing mid-field or whatever. But then after I’m done, you know, my teammates understand when I say, I need to go back in goal now, you know. So, like, you know, I’ve managed to adapt, I guess and still to you know, try to find joy in those things even if I can’t participate as I would like to, if that makes sense. But no, oh my God like people have it so much worse. Like that person that you were just talking about who like can’t get through a sentence. At least I can do that, you know.

 
The mental health impact of Covid 

Some people we interviewed were unwell for months. This prolonged period of illness negatively impacted their mental health. For Gulsoom, experiencing long-term fatigue had an impact on her mental state. She said, “I lost my self-esteem, confidence, it just puts you in such a bad, negative mind-set.”
 
For Razia the impact on her mental health was linked to fear she felt about her ability to function in daily life. Razia experienced considerable brain fog which made her anxious about caring for her children. She regularly forgot things and had to consciously check she had turned things such as the oven and the hob off.
 

 

Razia’s brain fog causes her to continuously forget things, which makes her fearful about caring for her children on her own.

Razia’s brain fog causes her to continuously forget things, which makes her fearful about caring for her children on her own.

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I’d forget how to do the basic things and so, when people talk about brain fog and then I tell, you know, it’s like when you’re pregnant. When you’ve had a baby or when you’re a parent you might get it anyway, you’re, you know, even if you work long hours you might be used to forgetting things. It’s not just why you’ve walked into a room or forgetting where you’ve put the keys. It’s actually it’s actually bigger than that because, when you’ve got three, because it scared me. I said to my husband, I’ve got three little ones at home and, you know, he’s going to work probably thinking, “Are they safe with her today? Is she going to be all right?” [laughs]. Yeah, no, he’s right to but then the anxiety starts kicking in because I think, before I do anything stupid get the kids out the kitchen and I literally, got to a point where I was like, I’m not having the kids in the kitchen. Even when I’m not cooking, even when no oven is on, no nothing is on, nothing is boiling, and my anxiety would kick in. I get so anxious, I’d be like, no. And I’d look around thinking, literally, like cooker’s off, hob’s off, oven’s off, kettle’s off, everything is off. Right. And then I’m like, what else could they hurt themselves, what have I not done? I then start looking for things I might have got wrong because it was happening that often.

 


 
For others, like Sindhu and Miura, the experience of having Covid and living through the pandemic caused them to develop anxiety. Sindhu had never experienced anxiety before and despite gradually recovering from her physical symptoms she continued to have anxiety attacks. Miura also experienced depression alongside her anxiety.
 
 

Miura describes negative responses to her social media post about taking the vaccine.

Miura describes negative responses to her social media post about taking the vaccine.

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When I took it I made sure I put it in social media. Just so you know to raise more awareness, so people maybe are more engaged to take it. I don’t know? But a lot of people in my community said, “Why did you take this? Based on what?” I wouldn’t take this,” dah, dah, dah, dah. So, there is a lot of resistance.

 

Sindhu struggled to cope with the anxiety she developed while having Covid.

Sindhu struggled to cope with the anxiety she developed while having Covid.

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I was so tired. Absolute tired. Then I think after my first one week it was just tiredness. Then I think by second week the tiredness started reducing. I was still tired but I was not sleeping constantly. But I don’t know if it’s like…I am generally not a very nervous person you know I have always read the books about this anxiety attacks and all that. I’m, I am not a person like that at all you know. I am generally a calm controlled and I know what’s going on I think. I’m sure other people are like that as well. I think the second week I could feel that I was getting anxiety attacks. But I could not put it down why. So you know you think about logically, you know husband at home, kids are fine, we don’t have any job insecurities, my work was really supportive they said you can come back any time you want, there is no pressure of working at all so they are very supportive. So you think about it logically there is nothing that makes me nervous and I almost recovered from it because my tiredness was going away. I had no fever, no classic symptoms so you think of the head there is no reason to be anxious but I was getting anxiety attacks at night.
 
And generally I am not that kind of a person, I have never had that. So I even, this was my husband asking you know, I can’t figure out or what is happening because that’s not who I am. I don’t know if it made any sense and he said maybe it is just you sitting at home, general stuff and ah I don’t know there are some studies saying that it could be just your, you know Covid is affecting the brain and you know. And I think maybe being a rational or you know you think about logically, I can think logically because for reasons I think of it like a flu and I could not figure out why it was affecting my brain you know. I don’t, I think my thinking capacity reduced a little bit but not to that extra you know I forget stuff, nothing like that. Just the general tiredness but more than general tiredness and anxiety attacks I was worrying. I think at night I will hold my husband’s hand very, very tightly at night and the thing is I could not place why I was doing that because nothing was worrying me. You know things like that, I think one morning he woke up with his arm fully bruised. Seems like I scratched him at night [laughs]!

 


 
See 'Emotional and mental health impact of the pandemic'.

Lack of visibility and understanding

Fatigue is one of the most common persistent symptoms of long Covid, impacting people physically, mentally, and socially. People we interviewed found that because their fatigue was not always visible, others often didn’t view them as being chronically ill. Nor did they understand why they were unable to continue daily tasks. The lack of understanding about long Covid symptoms was often frustrating in both social and professional settings.
 
Lyn explained how visibly appearing ‘healthy’ to others led them to struggle to believe that she was ill. This was frustrating for her while she was adapting to the chronic nature of her symptoms.
 

 

Lyn feels that because she does not physically appear to be disabled or have a chronic illness that people struggle to believe she is ill.

Lyn feels that because she does not physically appear to be disabled or have a chronic illness that people struggle to believe she is ill.

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What did your mum say when you did eventually tell her that you were sick?
 

She was upset. She was hoping, basically, that it would not be true but she has accepted but it has taken some time to digest and because my aunt died from Covid.
 
Yeah. Was that her sister?
 
That’s her sister in law. So, basically, a year now I’m still not functional as much as I want to be and it just take time and she keeps saying, “There must be something else that can be done.” I say, “No, mum, it’s all up to me managing myself and me managing my medication and me being a part, we have limited capacity to do things and we have to accept that.” It’s very sad now because I am quite disabled. And I’m young. I’m not old.
 
I don’t look like a different person. It’s like a hidden illness which, because when you see a person or a person like me, they will say, how could possibly anything be wrong with you? An expectation of the community of perception of how disabled or chronic person will be. They have to look miserable. They have to look not well dressed, you know [laughs].They must have maybe a wheelchair on or drips or something, I don’t know. You know, that’s the kind of look they are expecting but when they look like somebody like me, they can’t put it together… that that’s how I am.

 


 
Mary and Aaliyah also expressed frustration about people’s failure to understand how long Covid symptoms impacted their ability to attend work and complete certain tasks. Aaliyah expressed the difficulties she faced navigating work policies on sickness and trying to complete their workload when experiencing fatigue. Mary felt that a lack of understanding about the impact of their brain fog made people unsympathetic to what she was going through. They highlighted what they felt to be a gap in the provision of care for those with persistent symptoms in the community.
 
 

Aaliyah found it difficult completing their workload due to their fatigue.

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Aaliyah found it difficult completing their workload due to their fatigue.

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How do you feel?
 
Just tired, just have this fatigue you can’t explain it. You just feel tired and sometimes getting the day started or ending the day you’re just getting so tired and I’ve had instances where I’ve called my boss like, “Oh please can I just start two hours later with work because I’m just so tired.”
 
And they were fine, you know, you know, she said, “It’s fine, you can start two hours later,” but also, I found out I have to do two hours later as well, finish two hours later. And that start clashing with the evening chores and then you continue getting tired and tireder because your day’s so prolonged with the rigid things to do because you can’t delay dinner time. You have to keep on working because you started late, you have to finish late so I’m just in that cycle of trying to find the best way to manage it. And you know, it’s very difficult, you can’t say, “I’m sick, sick, like I’m off sick,” per se but you just want people to understand like you, you are on a very reduced capacity kind of thing.
 
But it’s very difficult again with the employers, like, you know, what do we do, do we say we’re 10 per cent sick, you’re sick, you’re not sick? I work in HR, and I know how, how sometimes com-, complex to categorise you but sometimes you just want people to understand that look, you know, something that usually takes me half an hour might take me an hour which means the volume of the work gets up here.
 
So, you haven’t had any adjustment to your work?
 
No because again I’m learning it, they’re learning it, they don’t know, because you know, we’re operated by policy, what does the policy say under this? Your working environment is just like, it’s not, it’s not like a family, you know, like how you handle your, the family affairs, it’s like, ‘okay I, you know, I feel for you, but I don’t know, what does the policy says where you are slightly not well? Well because what we know we record you as either ill or you’re well, nothing in between,’ you know [laughs].
 
Yeah so, we don’t know, the employer doesn’t know, he knows how to handle it. I could defend them but all I’m, my job is just to communicate how I feel and so far their support, you know, supportive but, you know, I’ve still got my workload to deal with.
 

 

 

Mary felt her colleagues did not understand the reality of her symptoms.

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Mary felt her colleagues did not understand the reality of her symptoms.

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I found the tiredness quite devastating, but I remember going to, I had like what I would call like lung pain so pain in my back and I kind of like contacted the GP to say, “Look, I’m just worried about this and I’m breathless.” And I know that they weren’t seeing patients at the time, but I didn’t, I wasn’t very impressed with the care at all because I just don’t, I think that they ignored my primary diagnosis as well. So, I finally went to work. I still don’t think colleagues, because I work for the [employer name], they appreciate long Covid, the impact it has on you. You know, ridiculous requests of doing deadlines and whatever and when you’re physically tired, you just can’t do it. You really, really can’t do it and although you want to be a really good team player and do and you do the work that you’re able, that you were able to do, while I was in recovery, I could not do it. I couldn’t do it and see I had a bit of brain fog as well. So, I remember mentioning to one of my managers that I couldn’t do the report that she asked me because I couldn’t remember the names of the children and her response was, “Oh well doing the report will help with your brain fog.” And I just found, I just found that it was just a really unsympathetic world for people that, if you’d recovered from Covid and didn’t require any extra treatment or anything else like that. I think it was fine or if you wasn’t admitted into hospital, I think people say that they had a really positive good experience. But I think if you were in the community, you were kind of left alone and I don’t and I don’t think that people may understand enough about it and especially about long Covid, that actually even understand what it’s like to have Covid and the emotional impact that it has for some people, you know and that.


 
For people we spoke to who were living with long Covid, the lack of understanding of the impact of Covid and persistent symptoms made it difficult for them to navigate social situations and be understood in professional environments. The need for greater support and understanding was felt by many we interviewed.
 
*We often interviewed people on their ‘good days’ which is when they felt they had the energy to take part in the interview. Therefore, while they may appear ‘healthy’ their symptoms are very real. 

 

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