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.
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.
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.
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.
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.
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.