Staying at home for long stretches of time is nothing new for me. It isn’t for most disabled and chronically ill people. I can remember long summers spent tucked under my duvet, too fatigued to leave the confines of my bedroom. I can remember parties I’ve missed, brunches I’ve cancelled at the last minute, and the loneliness associated with a health condition that prevents you planning ahead for more than three days in advance.
Being in a high-risk category in the midst of a pandemic hits different. This time, the whole world is self-isolating with me, with many now spending their days confined at home for the first time. But if there’s one group that knows how to deal with that, it’s people who live with chronic illness and those with disabilities.
I have Crohn’s disease and asthma. While the former doesn’t put you at high risk of COVID-19 in and of itself, I have been on immunosuppressant medication – which lowers my body's natural ability to fight illness – for the majority of my adult years. At the time of writing this, I have been in self-isolation for seven days, and haven’t left my house. Not because I’m displaying symptoms; but because if I was to develop COVID-19, I would likely become seriously ill and could possibly die. While I have been extremely unwell before, I’ve never truly felt that my health conditions pose a real risk to my life.
Being in your twenties and chronically ill is a special type of oddity, and one that has amplified my anxiety particularly during this pandemic. Everybody around you is in the prime of their health; hospital staff question why you’re there so often, and doctors apologise for the cards you’ve been handed in life. Throwaway comments on social media, particularly during the early weeks of the pandemic, suggested for all of us not to worry, as only the already-sick and elderly will lose their lives. These types of comments aren’t confined to faceless avatars on Twitter – our prime minister Boris Johnson even proclaimed that loved ones will be lost during this time. The idea that you’re disposable within society is deeply depressing, but not a surprise for many disabled and chronically ill young people.
Candian fine artist and activist Sharona Franklin creates work around her experiences of disability, ranging from gelatin sculptures and antibody quilts. She also runs the disability meme account @hot.crip. Sharona tells me over email that she’s not surprised by these types of statements: “It’s sort of laughable at how Darwinian folks are being lately. It’s all too common that able-bodied folks have the mindset of considering their lives a priority, while also lacking empathy for anyone who may be genetically compromised by illness and disability.”
Our governments may consider our lives dispensable, but it seems like communities have been organising over the last week or so to help those more vulnerable as COVID-19 continues to spread. “A lot of disabled folks including myself have been offered recent help. It’s beautiful and necessary to see able-bodies banding together to help disabled folks.” Sharona continues: “It can also be triggering, since we've been medically self-isolating for decades; surviving deathly infections and life-challenging circumstances daily, with no help or response. Allyship cannot be performed.”
Like myself, most chronically ill and disabled young people are used to living their lives behind closed doors. Therapist Alice Colley tells me jokingly: “I do feel like I've been practicing for years for this!” Rosa Mercuriadis, the founder of Sick Sad Girlz, an online community for chronically ill and disabled women, agrees: “Honestly, the only difference between this and being home because of a flare-up is everyone else is home too. I have masks, gloves, hand sanitiser and a lot of Evian. I feel like this is more than I do for a flare-up, but only marginally.”
While we may be more prepared for this period of isolation than most, one thing that doesn’t go away is the loneliness associated with spending a lot of time shut off from society. “Self-quarantine is not new to me, and reminds me of all the moments I missed as a kid, from school trips to birthday parties and dances,” Sharona explains. “Honestly, it’s lonely but natural for me to be isolated at home sick even now as an adult.” While the rest of the world gets to grips with spending half their day on video calls and Facetime, disabled and chronically ill people have long been seeking out ways to be present in the digital world when they are unable to be in the physical realm.
Sharona spent her childhood watching worn-out VHS tapes, cut off completely from the rest of the world, but she’s now able to cultivate a community of other disabled people via her phone screen. “Technology in general has changed my relationship to my illness, along with the developments of biotechnology, and biopharm,” she says. “I’ve recently opened up my art practice online to social media only within the last few years. My newfound openness to sharing online has morphed my experience with my body, and how my artwork, ideas and friendships can travel online outside of my home cybernetically.”
Dr Sarah Jarvis, clinical director of patientaccess.com, agrees that supporting high-risk people digitally is absolutely vital during this period of social distancing and self-isolation. She urges those who will be stuck indoors to “prepare and make sure you have social support while you are physically isolated. There is no doubt this will have a toll on mental health for those self-isolating for long periods of time. Set up a support group, work out how you can work with your friends to have regular contact remotely.”
Sharona, Alice and Rosa have all been finding ways to foster meaningful community long before the pandemic hit. But now, communities like Sick Sad Girlz become increasingly important in ensuring we all remain as connected as possible. Alice plans to use her training as a therapist to “start sharing on @alicesickface daily worksheets, self-care tips and grounding techniques to help people who are having trouble with their anxious thoughts.” Sharona will continue to share resources and art across her platforms. Personally, her work as an artist has been absolutely vital in me losing the shame around my health conditions.
Being chronically ill and disabled at the best of times is confusing, isolating and sometimes depressing. But as Rosa says, it doesn’t have to be that way. “Find community in isolation. If you don’t know how to find your own community, come to ours and we will help figure it out with you. Everyone deserves to be seen and heard in these anxious times. We need to use technology for good and connect with each other.”