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.

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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.

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.

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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.

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.

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.

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.

 

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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.

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.

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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.

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.

 

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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.

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.