When lockdown landed in the UK, I’d been quarantined for three weeks. A surgery at the end of February, a battered immune system and a nervous consultant meant we made the decision to batten down the hatches early. But in reality, I’d been social distancing for the best part of four years already.
Most of us with long term health conditions are homebodies, whether we started as them or not. The nature of chronic illness is unpredictable, bad days usually follow good days, but sometimes they appear without warning or reason too. It means most of us spend our time adapting our lives in an inaccessible world to be more accessible – we’re doing the best we can from home. Missing out on hangouts with friends, figuring out how to earn an income without leaving the house, we’ve been social distancing since long before Covid was on the scene.
Christine Miserandino’s Spoon Theory has given us a way to explain this to our friends. When energy units are compared to spoons, it’s easy to demonstrate how those of us with chronic illness are starting our days with less in reserve than the average person. When you only have a limited supply of daily spoons wasting them on the commute, office politics, the general admin that comes with being a sick person who wants to leave the house, it feels like exactly that, a waste.
This was certainly the case for me, and most of the people I know with long term health conditions. Once you’ve been given a label, Fibromyalgia, Endometriosis, Crohn’s, IBD, PoTS, you’re left to it. Unless a consultant can offer you a surgery, by and large folks with chronic illness are left to manage their symptoms and pain themselves. There’s no assistance, and there’s certainly no help when it comes to managing things like jobs, household chores, the day-to-day admin that comes with being an adult. So we try freelancing, we start Etsy businesses, we look for ways make a living that don’t involve commuting to an office for a 9-5. We say no to seeing our friends, to nights out, because we have to prioritise our energy supplies toward looking after ourselves first, work second, and with any scraps of energy left we can think about socialising.
But now Covid has opened doors for those of us usually tucked behind them. With the rest of the world suddenly stuck at home too schools have moved online, office jobs have become living room jobs, education and employment have never been more accessible. Last week I saw a listing for a job I left five years ago. I left because they wouldn’t let me work part time from home, their current ad states the role will be WFH permanently. This year I’m studying for my Masters, and for the first time ever in my educational experience I’m on track for a 100% attendance, a big leap from my high school average of 40. None of this would have been possible without the pandemic (and its sponsors Zoom and Teams), and I know I’m not the only one who has benefitted from it.
“The work from home orders were a blessing in disguise for me” says Nikki McMullen, a content editor for a UK charity. Nikki has Crohn’s disease, and has been isolating since March 2020. “During the past year, I’ve adapted my routine to maximise my energy and creativity each day. I’ve felt emboldened by having my meetings virtually (a lot less taxing!). I’ve even seen improvements in my physical symptoms and general well-being since the daily stresses of office working went away.”
Even the increase in home delivery slots at supermarkets, independent local stores offering deliveries, the ability to conference on Zoom rather than in a hotel inside the M25, all of it improves quality of life for those living with chronic illness. During the pandemic we’ve been able to go to the theatre, eat our favourite restaurant dishes, socialise with our pals online, and it’s all because everyone else is at home too. We’ve been able to pretend we’re ‘normal people’ who can work and socialise, because we can do it from our beds with our hot water bottles in our Lululemon Align pants.
Now the question for most Spoonies is, what happens when the pandemic is over? With an end to restrictions on the horizon this summer in the UK, hopefully the world will be getting ‘back to normal’ – but is that really what we want? It’s estimated in the NHS Health Survey for England that one in four women in the UK are dealing with a long-term health condition. It’s unlikely that all of those women will need adaptions in the workplace but imagine the number of people we could empower by continuing flexible working practices, allowing people to work from home, continuing to encourage discussions around health restrictions. It shouldn’t have taken the rest of the world being stuck at home for education and office jobs to become accessible, but now that they are retracting those freedoms would be crippling for those of us with chronic illness.
With the government pushing the ending of restrictions this month, rising Covid cases and most under 30’s still waiting for that all important second dose, I can’t help but feel desperately panicked about the future for me and other chronic illness folk. Since we’ve been wearing masks I haven’t had a single cold, a far cry from my pre-Covid average of one a month. I and most of the people I know with long term illness are dreading July 19th, where most of us will have to return to our own kind of social distancing. The kind where we say no to events that are too busy, that involve being out of the house too long, or because our compromised immune systems have picked up another virus.
So when you’re standing at the pub bar again, when you’re visiting the theatre or a concert, when you’re booking tickets for a festival or hopping on the tube, please spare a thought for your chronically ill friend. Please keep your distance if you can, wear a mask if you can, discuss the accessibility of your workplace with your colleagues and employers. Spare a thought for those of us who have isolating since long before Covid.