Shereen's story: my experience of long COVID

This content mentions anxiety, which some people may find triggering.

According to ONS data, in December 2021 over 1.3 million people in the UK were experiencing the effects of long COVID – that's one in 50 of us. Symptoms vary and include shortness of breath, cough, chest pain, chronic fatigue, muscle pain, loss of appetite, changes to sense of taste and smell, confusion, depression and anxiety.

Managing the physical symptoms of long COVID is difficult enough, but the mental health impact is just as severe, made even more challenging due to the limited awareness and understanding of the condition.

Shereen, 38, from Glasgow, was first hit by a severe bout of coronavirus in March 2020 which required hospital attention.

"When I got to the hospital to be checked, I was put in a waiting room with lots of other people with suspected COVID. I remember thinking to myself that if I didn’t have it, I would have by the time I left. When I saw the doctor, she wasn’t wearing any PPE, and I was so worried for her and scared that I would be the one to infect her. That was a thought that played on my mind for weeks after.”

Diagnosed in the time before routine testing, Shereen was sent home to her flat in the city centre where she lives alone.

“I was so ill, I felt like I was going to die. The symptoms of COVID are agony. I’m normally a very self-sufficient and capable person, but it felt like I had visited a war zone. Aside from the physical pain, I felt toxic. I was very conscious of the risk of infecting others and made sure to isolate, even covering the letterbox with a plastic bag. After my initial illness, I hoped I would be on the mend, but I’ve suffered from relapses ever since. The first was around three weeks later. It felt like a scab being ripped off my lungs; it felt like they were on fire. Even so, it took me six months to go back to the same hospital I attended when I first had COVID to attend a respiratory clinic. I was so anxious about being there again, it gave me panic attacks.”

While Shereen is still feeling the impact of long COVID, the relapses are less frequent than before. However, her life now is much quieter than before as she suffers from exhaustion and fatigue. She can’t walk for more than 20 minutes or talk for long periods without scheduling enough rest to avoid being completely wiped out. She is still living with muscle and joint pain, for which she has to take two nerve pain medications and see a physiotherapist.

Prior to falling ill with COVID, Shereen was a singer who was also ready to embark upon a new cupcake-selling business. Both of those have had to be put on hold indefinitely, and she is currently unemployed.

“While living with this relentless condition, I just don’t feel myself. It’s like everything affects my sense of self and I always feel different. That is really tough to deal with because I don’t know if I will ever feel normal again. It really hits you emotionally as you just want to get better, and I always worry about another relapse as I often think to myself ‘I can’t do this again’.

“I sought counselling because I knew something was wrong. I had a really horrible feeling constantly, as though I was reliving the agony of when I was sick. The counselling is helping. I’m not usually very open about my emotions, even to myself, but COVID exploded something within me so my normal coping mechanisms weren’t going to work. The counsellor does different exercises with me to identify my feelings and how I relate to them: for example, asking me to describe the feeling as a colour.

"I catch up with my friends in video calls, but I need to make sure I’m well rested and have the energy for it. Other than that, I find chatting to people on the Long COVID Facebook Group has been really helpful. It’s great to talk to people who really understand what you’re going through and share ideas. That’s why I also set up a private Facebook group that meets regularly to talk about everything – life, symptoms, dreams for the future. I knew there would be people out there who would be struggling to cope so I wanted everyone to feel like they’re not alone. We’re all there for each other in a way that perhaps our friends and family can’t be.

"Other things I’ve been doing for my own mental health are yin yoga, meditation, keeping a mood diary and creative writing. Although my left arm doesn’t seem to be working and I’m left-handed so I’ve had to write with my right hand."

When we spoke to Shereen, she was waiting for her first vaccine. For some people with long COVID, the vaccine has helped to alleviate their symptoms.

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