Four years ago, I caught the flu – and I am still stuck in bed, struggling to breathe. A bit like those with long Covid now, I developed postviral fatigue after a short illness. You could say I was into viruses before their mainstream second album.
Born with a muscle weakness, I was already familiar with the fragility of the human body. But the overnight change, post‑flu complications, hit me like a truck. In the early days, stuck on a ventilator and barely able to move, my brain was so traumatised that I thought my bedroom curtains were on fire. I didn’t even have curtains.
Fatigue is hard to understand until you have it. It is not tiredness or burnout. It is all-consuming, an oppressive cocoon that weighs down your body. For me, an energetic day used to be getting the train to work and drinking with friends until 1am. Suddenly, it was cleaning the back of my teeth.
When you are a child, you think doctors are meant to make it all better. When you become chronically ill, you realise you are lucky if you are believed, let alone treated. There is an odd privilege in having a “pre‑existing condition” before you get ill – a genetic disorder is hard to doubt – but it brings its own problems, not least the assumption that your disability is to blame. Finding a health professional who accepts and understands post-viral illness is akin to tracking down a unicorn with a medical degree.
Ask someone with a chronic illness how they are and they will probably play down this reality. No one likes a moaner. Besides, when society thinks being disabled is a life of pitiable suffering, you don’t want to reinforce the prejudice. It is like how most of us are happy to make endless jokes about our home town, but see red the minute a stranger suggests the big Asda isn’t actually a social venue.
The truth is, being ill every day is the hardest thing I have ever done – and I grew up in Grantham without becoming a Tory. It is not simply a case of coping with the symptoms, but also what they do to your life as you knew it – stealing nights out, careers and the ability to put on a bra with ease.
This series is called “How I returned from rock bottom”, but the thing about chronic illness is, well, it is chronic. Yes, some people recover. But for most of us it is about learning to live long-term with a very different body – one that can get a bit better, then a lot worse, then whatever it feels like that month.
I have not “overcome” anything, but I am happy and hopeful. I am also absolutely knackered. This is not the narrative society is used to. They don’t make Hallmark movies about someone never learning to walk again. But I think it is a much more important story. It is easy to be celebratory when you have made it to the top of the mountain; much harder when you are stuck halfway, freezing your arse off.
Chronic illness is sometimes described as a form of grief, as if you are grieving for your former life. I prefer to think of it as beginning the next stage. Sure, things are not like they were. You are probably a lot more horizontal. But life does not tend to stay the same for long. The pandemic has taught us that.
It is not healthy – no pun intended – to force yourself to be OK. It is completely normal to miss how things used to be. There are days I want to be in the pub with friends so much that the only thing to do is cry. So, cry. Have a snotty sobfest. But you will smile in the end, too. Lots. Not because the pain has stopped, but because, eventually, you will realise that the pain won’t stop you being you.
It is easy to chastise your body for “failing”, but I try to feel pride in its victories. Mine copes with more most days than other young people’s do in a decade. I reward it accordingly, usually with codeine wrapped in a chocolate roll. I am also teaching myself to stand up to medics, when necessary, and turn to the online chronic illness community for advice. I find the things I can do and I squeeze the joy out of them – every drop.
Maybe all of this sounds familiar. Maybe your own curtains have just caught fire. I am not going to patronise you by saying this can be easy, but I would wager that it will not beat you, either. The human capacity for resilience and renewal is greater than most of us imagine. Once you have survived illness, living – and living well – comes step by step.