Chronically ill people are the experts in this strange new world
After months of staying inside it’s natural to feel nervous about leaving our homes – even if we desperately want to
I have not left the house for nine months, and it is more than two years since I became largely housebound. Photograph: iStock
It is a strange feeling to be sick in a pandemic. I don’t just mean for the ones who fall ill from the virus. I mean the rest of us. Those who were ill long before “coronavirus” entered the vocabulary, who got sick and stir-crazy when it wasn’t headline news. Suddenly, everyone is experiencing what those of us with chronic illness have long been familiar with: the urge to break out after being trapped inside for months – and the quiet nerves about doing it.
Chronically ill people are the experts in this strange new world. We are well aware the human body is not an impenetrable beast, that immune systems are fragile, that nerve endings can sting, that lungs can struggle to gasp for air. We are also used to isolation: the mind-numbing boredom of the 26th Friday without going to the pub, and the unrivalled joy of the first overpriced gin afterwards.
I have not left the house for nine months, and it is more than two years since I became largely housebound. I hate that word. “Housebound”. As if you were an inanimate object, tied to the back gate.
The bad winter flu of 2017 combined with what I’ll call some D-grade genetics and I developed a kind of post-viral fatigue. I’d like to downplay it for laughs, but ventilators are hard to make jokes about. I couldn’t breathe, could barely move; every muscle hurt. It would have been easier to have been hit by a truck, rather than just feel like it. At least I would have had a good story. But as the world is learning, viruses can be – what’s the medical term? – total b******s. I became housebound. The word doesn’t matter. The result is the same.
As lockdown slowly eases, I have found myself thinking about what it is to leave the house after a long spell inside. The rest of the public will, in time, find themselves in a bizarre wonderland: visiting a friend’s house again, getting on a train, sitting in a bar. These are the firsts that are not actually firsts, the new experiences you have had a thousand times before. It would be natural if you were feeling anxious. Isolation is hard going, but then so is escaping it.
I’ve been through that particular looking glass myself. When I fell ill, life in every normal way stopped. There was no going out. No inviting people in. Just bed, and my thoughts. Luckily I am fascinating, but there are limits to even my internal chat. Months pass, the pain and exhaustion hum, and life as you know it has fallen in on itself. Eventually, it is a Thursday night, though you have lost all knowledge of what day it is, and you find yourself working out how many tiny cracks there are on the walls. It is 3am; you think of the last time you sat in a restaurant and wonder if you ever will again.
I don’t know if it was growing up with a disability, but I was always the sort of person to appreciate the everyday moments. I looked at the water as the river rippled in the evening light. I paused to laugh as a mate danced drunk in the road (do not try this). Stuck at home, I became grateful for that, as if each frame was safely banked and the memories could be replayed on a loop.
When you are a child, they say television restricts your mind. But when you are ill, it opens it. Watching hours of the Tour de France inside four walls, I was out of bed and soaring over the sky-blue Alps. Dozing through the London marathon, I was back at work wading through the noise of the city. With Springwatch, I was in the park listening to the birds sing.
Still, I ached for the world. I missed people: the arms of those I knew and crowds of those I didn’t. I missed nights out: eating food someone else had cooked, the smell of cigarettes as we huddled next to a garden heater. I missed getting ready to go out as much as being out: putting on an uncomfortable bra and the way mascara smells when it sets. I even missed trains: the freedom of the tracks, the possibility of a departure board.
A few months in, I began to collect photos. Photos of people I loved. The places I used to go; the carefree smiles and the towering buildings. Instagram squares printed and hung on a grid. It was my own #lastnormalphoto hashtag, except for my eyes only. When I had started to recover enough to go outside a little, I would take a photo of myself each time. At work. At the park. To prove to myself I had been there. I had done that. The trees were not a figment of my imagination. My lungs had breathed the air. I had been myself, at least for a while. I call this the narcissistic phase.
The first time I saw outside again was to go to the hairdresser, which in retrospect seems apt for where we are now. It had been five months since I had fallen ill and my hair had carried on, even when I had stopped. It hadn’t occurred to me to try a lockdown-style home cut and I resembled a pasty Rapunzel.
When your body has denied you the chance to take the mundane excursions most people do every day, having that opportunity again feels electrifying. In the spring air, the blossom unfurled and lined the streets with pink. Chunks of blond hair dropped to the floor, the smell of perming solution in the air. Manoeuvring through the streets to go back home, I fixed on the surroundings. The paths lined with blooming trees, the strangers carrying the weekly shop. It felt like a scene from that 1990s Brendan Fraser film where the time-travelling caveman sees cars for the first time. Wonder mixed with terror.
There is a feeling, somewhere between walking through your front door and reaching Superdrug, when your brain wants to protect you from the outside world. You tell yourself you are going to die, possibly next to the tampons. You are not, of course, and you breathe slowly, reminding yourself that you used to do this all the time.
That you are fine.
That you are actually great.
I remember the panic attack I had the third time I went outside again, but I remember the happiness, too. The 99 I slowly licked in the park and the towering Flake, like I was eight years old again, triumphant by the ice-cream van at the school gates. I remember the utter joy of holding people I loved for the first time in a year: the smell of familiar perfume and the feel of stubble on my cheek. I remember the other feeling wavering in my stomach: relief. I had found something that I had lost, if only for a little while.
I won’t pretend chronic illness is the same as lockdown. One occurs because sickness has already come, the other is an attempt to avoid it. One is usually permanent, the other is temporary – even if doesn’t feel like it. But the lines between healthy and sick seem more blurred than they used to. Or, to put it another way, we are all a little housebound now.
Established wisdom says not to take advice from someone in their pyjamas, but if I could offer any, it would be this. The thing that tends to keep you awake at night during these times is not what you miss, but the fear that you will never get it back. You almost certainly will. You will in time regain the precious things: hug your mum, sit in a theatre, gorge on a McDonald’s at the end of a night out.
There is such happiness in that – in rediscovering the people and places we love. But it is not ungrateful if you feel less than joy, if you feel some pressure or panic lurking at the thought of going back outside. It is kind to give yourself time to readjust. To go just half a mile from home at first. To start small. Savour the little details; ground yourself in the sights and sounds. The unfurling of the lilac. Your best friend’s laugh.
If you still find yourself struggling, that’s okay too. Don’t pathologise normal human responses. If you have not seen your sister in months, it is perfectly natural to be sad. If you haven’t been in a crowd since March, it is easy to be anxious – even more so if you’re shielding and are now going out for the very first time. Similarly, if you find those feelings dominating your mind and restricting your ability to get on, professional help is there. It is well known that mental health support is not always available on the NHS, but GPs are still the best start. Many therapists are now online, and some are even free.
People talk about a grand return to normal after lockdown but the truth is, “normal” is hard to refind. Nothing is waiting for you exactly as you left it; events inevitably alter our viewpoint, each of us rarely leaves a rough period unmarked. And that is okay.
Things change. Nothing is guaranteed. You adapt, perhaps even finding something better than before. We are taught to always be moving. That a night in front of Netflix is wasted. That Fomo is the modern way.
If being unable to leave home does anything, it helps you re-evaluate those particular untruths. “Home” is just a different way of living, no less because it is smaller. It is a thing to be valued, to perhaps see more kindly than before. But if – when – you do get back out in the world, it will be all the more beautiful from your time away. Lick an ice-cream on a bench, as the summer sun warms your skin. Memories go round on a loop, inviting us out once again. – Guardian