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Long Covid
illustration Callum Abbott

‘It’s like my body isn’t mine anymore’: My experience of long Covid

A crushing sense of fatigue, hair loss, joint pain, and brain fog are just some of the symptoms of the longterm condition – but it’s the looming question mark over the future that is the most affecting

TextAlex DenneyIllustrationCallum Abbott

It’s my wedding day, so I’m out stealing flowers from a neighbour’s garden. I find a clematis to thread into my lapel, and run back inside the house to open the Zoom link and make sure everyone’s online. On screen, the vicar stands behind a cardboard lectern, the organist waits patiently by his Casio keyboard.

OK, let’s do this.

This is not, in all honesty, the wedding we had planned for. It was our friends who suggested it, a virtual ceremony in lieu of a real one staged as a surprise for my fiancée, who is in the back garden with our 18-month-old daughter. And yet, ushering them into the living room as a faltering “Here Comes the Bride” plays through the laptop speakers, the overwhelming feeling is one of gratitude. After all, this is April, we’re in the first throes of a global pandemic, and everyone is slowly coming to terms with the fact their plans for the year have all gone up in smoke. At least we’d managed to salvage something from this awful experience.

Speeches are spoken, the champagne-substitute continues to pour, and someone has an idea: should we try and get a dancefloor going? Well, there’s our daughter to think of first. We attempt a bit of moderately pissed parenting, put her to bed, and get ready for the rest of our big day. It’s around then that a familiar feeling starts to creep in. The laboured breathing, the hammering heart rate. I go for a lie down, but nothing seems to shift it. Reluctantly, we cut our wedding-day celebrations short. The dancing would have to wait till an undisclosed date in 2021.

A few days after the wedding, I’m referred to a Covid hot clinic and prescribed a course of prednisone for the shortness of breath. It is not a pleasant experience. In five days, I go from moderate anxiety about my symptoms to what feels like full-tilt depression – a rare side-effect of the drug, apparently – and the breathing isn’t getting any easier. I’m an asthmatic, so my doctor recommends upping my Fostair intake, but after another few weeks tooting for dear life on my inhalers the shortness of breath is still there, and the palpitations, and – a new development, this – a crushing sense of fatigue that makes even sitting on the sofa feel like an ordeal. Making tea in the morning, I can feel myself shaking: what did any of this mean? Another GP suggests the problem might be psychological – they put me on anti-anxiety meds, and an online course of cognitive behavioural therapy tailored towards people who obsess about their health. Was this me? I was willing to try anything at this point, but I felt unsure.

These are just a few of the highlights from my experiences with long Covid, an appropriately vague term for the lingering effects some people experience after contracting Covid-19. The symptoms are cyclical and bizarrely wide-ranging, from chronic fatigue to breathlessness, chest and joint pains, hair loss, migraines, and ‘brain fog’, another umbrella term encompassing memory loss, confusion, difficulty in focusing, and dizziness. From months spent trawling the web in search of answers, I know that many people have struggled with symptoms far more debilitating than my own. And yet, ten months on from a probable Covid-19 infection at the beginning of March, my own cling on with stubborn insistence. In bad moments, it’s like my body isn’t my own anymore.

“It’s the ‘cyclical’ part that makes the symptoms so psychologically difficult. You might have a few good days, or even a few good weeks, and think you’re through the worst of it. Then it comes back to give you a solid kick in the pants and you’re back to square one”

April and May were the worst months. Having seemingly shaken off the initial infection in a few days, the second wave of symptoms hit me like a ton of bricks. I spent long days in the garden, reading books while turning a deep shade of mahogany in the unseasonably hot weather. I started to develop a fear of going indoors, where my breathing became more difficult to ignore. The kids’ cartoons we would watch together started to feel sinister; I remember waking one night with my heart pounding, feeling like I was going to die with a Teddles song about brushing your teeth stuck on loop in my head. We would take our daughter for walks in the park, and I would sit on benches feeling guilty that I couldn’t keep up with her, or looking at trees thinking they looked like upside-down lungs. Maybe I was obsessed? In an effort to preserve my mental health, I deactivated my Twitter and watched exclusively heartwarming content on the telly. When I learned that Boris Johnson had been hospitalised with Covid, I felt emotional. That’s when I really knew I was ill.

Part of the problem with long Covid is that doctors simply don’t know what to do with it. A recent report by the National Institute for Health suggested symptoms could be attributed to four different syndromes, while parallels have also been drawn between long Covid and ME, a lifelong and poorly understood condition that can be triggered by viral infection. In the spring, I drew comfort from doctors who told me they were seeing people with symptoms that lasted a matter of weeks, and then a couple of months. Then I realised they were working with a timeline dictated by the spread of the pandemic: effectively, they were telling me what I already knew. Aside from the question marks that hang over the nature of the condition, it’s the ‘cyclical’ part that makes the symptoms so psychologically difficult. You might have a few good days, or even a few good weeks, and think you’re through the worst of it. Then it comes back to give you a solid kick in the pants and you’re back to square one.

In November, health secretary Matt Hancock announced plans for 40 new clinics to be set up in England by the beginning of December to support people with long Covid. It was welcome news, but a call to my GP in mid-November went nowhere: they’d seen the same headlines I had, but had no information about clinics opening near me – this, less than a fortnight before the clinics were supposed to be up and running. Last week, I tried calling back – still no luck, but a centre in my local borough of Lewisham was due to open “in the coming weeks”.

For anyone wavering on whether or not to get a vaccine, you should know that long Covid can affect people of any age and background, with recent research conducted by King’s College suggesting that around ten per cent of 18-49-year-olds who contract Covid-19 experience long-lasting symptoms. According to NHS chief executive Simon Stevens, “Long Covid is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands.” If those kinds of numbers are borne out – and according to experimental data published by the Office for National Statistics last month, they already have been – that will spell serious implications not only for the NHS, but for the economy, with thousands left unable to work.

It’s tough to stay positive amid all this, but there is comfort in knowing that other people have undergone similar experiences. There have been times where the guilt I’ve felt at not being able to look after my family this year has been almost as bad as the symptoms themselves, but stories like Kathryn Bromwich’s moving piece on long Covid and trauma for the Guardian helped: as she writes so succinctly, “If something causes you to suffer, those thoughts are valid too.” I should also acknowledge here that I’m one of the lucky ones. I have a brilliant family and fiancée (internet wife?) who has been instrumental in holding our shit together this whole time. I am still able to work, and “I’m still breathing”, as my brother put it to me in one of his legendarily pithy pep talks. (Thanks, brother.)

We’ve also got a new wedding date, vaccine gods permitting. I hope there’ll be dancing.