Facing up to long Covid

Long Covid is politically problematic, medically uncertain, and personally scary. It is too easy to look away.

In media narratives this summer the Covid-19 pandemic was eclipsed by the cost of living and climate crises. But in practice these crises co-exist and interact. Long Covid makes heatwaves and price hikes a whole lot harder to bear.

I was healthy, triple vaxed, and have been down with long Covid since February 2022. This is not a pity blog. It’s me learning to speak from this new place in a moment when I can. To tell you something about what it’s like here. And to ask you not to look away from long Covid, this ‘mass disabling event’, which is affecting 2 million people in the UK, and will likely have a direct impact on hundreds of thousands more this winter.

I have the neurological cluster of long Covid symptoms. Headaches, fatigue, dizziness, brain fog and more. At my worst, I have been bedbound for months at a time. I’m currently enjoying a good hour or two some days, though still mostly unable to leave the house, read a book, listen to music or podcasts or look at anything on a screen bigger than my phone.

Here’s five things I’ve learnt from my first six months of long Covid.

We need fifty words for fatigue

For me, fatigue is not a presence, like tiredness; it’s a complete absence of *any* energy to animate my body. When my fatigue is bad I feel like an inanimate sack of matter.

It is also sleeping like the dead, during bad periods for up to 16 hours a day. And it is waking paralysed for many minutes, conscious but physically frozen.

The word gets used by my family to describe what I’ve learnt to call ‘post-exertion symptom exacerbation’. The crashes that follow living beyond my ‘energy envelope’, with cognition and emotion counting towards exertion as much as physical activity. I pushed myself to attend a school appointment and was bedbound for the following two months.

Working out how many ‘spoons’ (units of energy) you have for the next hour or day, and what each activity will cost you, is a constant feature of trying to live with fatigue. People with ME/chronic fatigue syndrome are veterans of this work.

How I can write this blog but can’t remember my kids’ names

What I’m capable of is in a constant state of flux. Planning is nearly impossible, and I cannot trust my mind and body. In my best hour of the day I can start a game of chess with my nine-year-old and think a few moves ahead, calibrating how challenging to be. But by 15 minutes into the game I can’t hold in my head what colour I’m playing or how the pieces move.

There are moments when I can think, enough to write fragments of this blog, to stitch them together slowly, over many weeks. And I often have to run through the names of our kids, my partner, my brother, and our cat before alighting on possibly the right one.

I recognise my new cognitive flaws; they are those of my grandmother at the start of her dementia.

Invisibility adds insult to injury

When people catch me during a good hour in a good month, I can seem quite well. I don’t look or sound very much different. My symptoms are all on the inside.

The vast majority of my basic test results are ‘normal’. GPs are not yet routinely testing for the emerging biomedical markers of long Covid.

So, this illness feels invisible, doubted. In moments when my symptoms subside I feel I have to push at my limits to test or prove the illness is still really there, to myself as much as to others.

During crash periods it is *I* who feel invisible. Mute, and without agency.

Each long Covid case has an impact on a whole system of others

My illness has had a huge impact on the lives of my kids, my partner, our parents. It is frightening, and desperately impractical.

I’m typical of a UK long Covid sufferer, being a woman aged 35–59. As well as being paid workers, we are *the* key category of unpaid caregivers for kids and ageing parents. When we go down, whole social systems become strained.

When you see statistics for long Covid sufferers, imagine for each one this additional cluster of dependents and relations who feel the impact. A new set of needs which may now call on health and care services. Not to mention the lost economic activity already apparently showing up in national statistics.

Finding a way to live with long Covid (and what not to say to your friends with long Covid)

It’s easier to imagine long Covid as a long slow recovery from an acute illness. My family and I are slowly learning to understand and to accept that it is in fact a long-term condition. We hope I will entirely recover from it one day, and we don’t know whether or when that will be. For now, we have to learn how to live with it.

Some months this just feels like basic survival. But in the better times I’m trying not to just live in some imagined, healthy future, but to notice what can bring me pleasure and fulfilment within the limits of a given day.

I love friends messaging me to tell me what’s happening in their lives. Don’t forget your friends with long Covid. And don’t will recovery for them too loudly (‘So glad you’re on the mend!’). I need to feel I’m enough as I am. That you can bear my illness. I love the phrase my colleague Deborah Fenney uses: ‘I hope you are as well as possible.’ It acknowledges the reality of the limits on my wellbeing, and the possibility of brighter moments, even within those limits.

I have my first hospital appointment this month. I’m not sure what to hope for from my clinician. Curiosity, humility and companionship, perhaps. To feel ‘seen’. To look at this thing head on, and to try to find a way through it together.