Richard and his family caught Covid in March 2020 before the UK lockdown started. His son rapidly progressed from feeling ropey to ‘screaming in pain, chest pain, coughing, fever, really unwell.’ They placed him in isolation at home, but a day later Richard was displaying flu-like symptoms and a strange sense of smell and taste. His wife and daughter had mild symptoms; his wife had conjunctivitis, muscle ache, and a headache and his daughter had a bad fever for two days, fine for seven days, and then another 14 hours of bad fever. Richard—who is a locum GP—was ill for about 10 days initially, then, 21 days after the start of Richard’s symptoms, he felt severe pain in his lungs and thought he might have a blood clot. He stayed at home but when he developed cardiac symptoms he called an ambulance; his tests at hospital were slightly abnormal but didn’t indicate a heart attack and he was sent home.

Richard continued to have crushing chest pains for the next three to four weeks and his ability to walk was severely affected. During this time, his son, who had been recovering well, suddenly at five weeks after his first symptoms started to scream out that his vison had gone black, and he couldn’t feel one of his arms or his legs. Richard thought it might be a severe migraine, but his pulse was very high, and he developed the same heavy chest pain that Richard was experiencing. Richard was unimpressed with their GP’s reaction to his son’s symptoms – the GP admitted he didn’t know what to do. Richard took him to the children’s assessment unit at the hospital, but his test results were normal. His son before Covid was ‘mega fit,’ active and happy and had rarely seen a doctor – Richard felt dismissed as an overanxious parent, but his son was referred to a chronic pain clinic. Unfortunately, they didn’t get on with the clinicians or find it helpful and his son felt they talked down to him and dismissed his physical symptoms as ‘all in his head.’

Having their physical symptoms dismissed was a common theme for both Richard and his son, especially with less senior doctors and even medical friends. Consultants, he thought, seemed to be more sympathetic and take it seriously. As a doctor, Richard feels that “It’s absolutely awful being on the other side. It’s given me a fantastic insight into what patients go through and I probably, I can equally probably be as guilty because of some of the comments I said about colleagues if there was a direct treatment and I could jump the queue by going privately, I would.”

Richard was eventually diagnosed with myocarditis (inflammation of the heart muscle), but his son has had no definite diagnosis. Both of them have continued to have relapsing and remitting symptoms for almost two years. “We were fairly all right actually in the summer last year, but a few months we felt completely brilliant, you know, we went walking—bike rides, cycling, cooking, we did everything, like normal, just totally normal and then just went on it again, and then, you know, January, February, March this year were just the worst and it was just horrendous.” They have both been taking colchicine to help with their heart symptoms, a powerful anti-inflammatory drug normally used for Gout that has been shown to help with inflammation of the heart muscle and lining.

Catching Covid again hasn’t helped Richard’s symptoms; “The second time round was, like, a billion times worse than any that I had the first-time round,” he said, but the whole family are worried about catching Covid again. His daughter has coped well, but she has been very worried for her brother and been upset: “I’m worried about like [brother’s] health and my health and worried about coming home with Covid and, you know, making us more poorly again.” She gets angry at school that other kids are careless, partying and doing stuff and don’t care about Covid, so they’ve not seen the impact of all it can do.

The family have been vaccinated; his son is due to have his second dose soon. Richard and his son did react to the vaccine, and they brought on worsening symptoms; Richard found his brain fog and insomnia increased after the vaccinations, but they are still positive about having them.

Richard feels his wife has been brilliant and very positive during this time, but even she has found his Covid rage mood swings, brain fog, and insomnia difficult to deal with. During this time Richard’s wife has been the main earner, as Richard has been unable to work and only recently gone back part time, juggling her own business, staff, Covid restrictions and caring responsibilities has been very hard on her. As a family he feels that “We’ve all had enough because it seems our whole life just revolves around bloody Covid.”

Richard’s message to health professionals is that he would like Long Covid and its multisystem symptoms taken more seriously and ‘don’t blame it all on anxiety’ and be more open to treatments ‘I think a lot of medical people are just bound with, you know, the fear of litigation, the fear of trying anything new, or veering off the pathway’.