One year ago, I was sitting in my studio with a fellow sick girl. In the year prior to our year indoors, I had actively sought out more unwell friends – people who could understand what I was going through, who cancelled plans as often as I did, and were only a phone call away. My friend, Kenzie, had spent an hour in an Uber from west London to come see me in Peckham. Neither of us knew it would be the last time for at least nine months.
As we sat around on my sofas, one week before Boris Johnson announced a national lockdown, we started to panic. Scrolling between Twitter, Instagram and the news, I realised this was perhaps more serious than I had anticipated. A friend texted me, advising I get my acrylic nails taken off before it was too late and the salons were shut. I finished my work day early, got the bus home, stocked up on Juul pods and didn’t leave the house for three months. From that moment, not only was I isolated from the community I had fought so desperately hard to find, but from the rest of the world too.
Living as a high risk person, I’m used to taking precautions in my day-to-day life to prevent illness. I ration how often I spend away from home, and who I spend those hours with. I carefully plan how far away I'll be from toilets, avoid certain activities and try to mitigate risk of a flare-up as much as I can.
At the same time, I am stubborn. I’ve trudged across cities in platform heels soon after leaving hospital with a sprained ankle. I get tattoos despite it being ill advised with my medication. I try to push myself, even if it results in extreme burnout and not leaving my bed for days. It’s taken years to accept that my chronic illness is limiting in terms of how I live my life. My days are often spent trying to urge those close to me to realise that my condition is serious, without having them think less of me because of it.
Before the pandemic, if I wished to, my illness felt like it was something that could be locked away in a box and ignored for a little while. But over the past year I’ve had to grapple with the fact that I will be sick forever, with coronavirus completely altering the way I exist, despite the fact I have been lucky enough to have not contracted the virus personally.
There was a certain comfort to the first few months of lockdown – that we were all in the same boat and as scared as each other. Suddenly, the requirements disabled people had been begging society to enact for years became the norm, as we all moved into the digital realm and being present physically no longer became a requirement for inclusion. Although the world was terrifying and unknown, it felt manageable.
However, as lockdown began to lift, watching friends meet un-socially distanced via their close friends stories became unbearable. Confined to the inside of my one-bed flat, and barely leaving the house for walks, I deeply resented anyone else for having a good time. As pubs, nail salons and non-essential businesses opened, people became more lax in their approach to abiding by the rules. And while the blame should be firmly placed on our mess of a government for throwing us in and out of lockdown for the past year, with vague rules that leave so much room for interpretation, I couldn’t help but feel jealous of those who managed to have fun in that brief moment last summer, when the majority of people were allowed to.
This jealousy brought more shame and isolation. As those who could frolicked in beer gardens, my Zoom calls and FaceTime sessions with friends became less and less frequent, but my own high risk circumstances didn’t change. I was still largely alone. Those who did make the effort to see me safely became my support network, and those who refused to acknowledge that my illness meant I couldn’t hang out with them slowly faded out of the picture.
Over the past 12 months, my brain has been running rings around itself. I flip from wondering if I’m being too cautious and gaslighting my own illness, to intense anger at the management of the pandemic and a deep sadness for the friendships I have lost in its midst. But in those moments I also remember the people who have shown up for me, and the unexpected friendships that have arisen from being completely isolated. The women who I have grown close to during the pandemic have not just held me together, but have deepened our friendship during a period of my life in which I have been more cut off than ever before.
For those of us who live with illness, we’ve always known that our lives can be flipped upside down in a single moment, which is something we all experienced last March. I also know I’m lucky – I haven’t lost anyone to the virus, I’m more than acclimated to working from home and I now have the vaccine. In what should be the final stretch of this truly cursed time, I hope we can leave the last year behind with more empathy for those who have different needs and requirements, and that our friendships, relationships and working lives can become flexible, accepting and accommodating.
Disabled people may have learnt how to live with loneliness, but none of us should have to. While I may no longer be able to lock my Crohn’s disease away in a little box, I no longer want to.
Ione Gamble is the editor-in-chief and founder of Polyester and the author of the upcoming book Poor Little Sick Girls.