Living with chronic illness can feel like you’re a prisoner in your own body. Or at least that’s how I’ve felt whenever I’ve had to give up on my day and crawl back into bed to just lie there, under the weight of fatigue that a good night’s sleep won’t fix. Being a young person with chronic illness means constantly saying “sorry, I can’t” and “maybe next week” under the premise that “tomorrow I’ll feel better.” But sometimes you don’t. Some plans get canceled and go without rainchecks because sometimes, you just can’t.
Thanks to productivity culture and capitalism, there’s a pressure to always be doing something. We’re blessed to live in a world brimming with choice and overflowing with possibility, but the flipside to this is that we aren’t permitted space to admit that maybe we’re too tired for that night out, brunch, or meeting. The chronically ill aren’t always granted the liberty of choice; a day can be abruptly derailed by a random bout of symptoms. Chronic illness doesn’t give a fuck if you had an essay to write or a friend to see today—it won’t wait until you have a spare moment to cripple you.
Of course, the pandemic has removed a great deal of choice, which means there are fewer things to say yes to and subsequently less pressure to be perpetually on the go. But with restrictions due to lift and clubs scheduled to reopen on June 21st here in the UK (wow?!), I’m already beginning to feel a tinge of anxiety about the prospect that almost everything will recommence. Life will be (perhaps) taken off hold—but I might not be able to fully revel in the merriment of the nightlife renaissance. It’s preemptive FOMO.
I know I talk a big game in my numerous pieces about excessive sex and my passion for clubbing, but the reality is that I was diagnosed with pernicious anemia—a hereditary, long-term health condition—a week before I went off to university and subsequently spent my orientation week desperately trying to negotiate treatments while sobbing by myself in my room because I was far too tired to even consider light socializing, let alone drink vodka until 3 AM as my peers were doing. I had never felt more alone in my life.
But my chronic illness wasn’t by any means out of the blue. Pernicious anemia works quite insidiously, and I actually started becoming ill when I was 16. I developed a stubborn nausea that would haunt me for the remainder of my teenage years; every meal felt like a chore that was swiftly followed by the unwarranted punishment of a churning stomach. I tried everything: adapting my already-vegetarian diet to reduce dairy and gluten, taking various health supplements, and drinking bucketloads of water. Nothing worked. Nausea consumed much of that period of my life. Family meals were a nightmare, and eating out left me feeling guilty and embarrassed every time I handed a barely-touched plate back to the waiter with the “I’m just not very hungry” grimace. I slept next to a bucket most nights. Eventually, I started developing other symptoms: severe heart palpitations, an unshakeable fatigue, panic attacks, weight loss, glossitis—the list goes on. I’d frequently Google “why am I so tired?” in a futile quest for answers, hoping to find miracle cures that would lift me from my stupor of nauseous exhaustion.
It wasn’t until I began experiencing intense pins and needles as well as a total numbness in my fingers and toes that could last up to three weeks that my mum made the link between what I was feeling and the condition we’d only recently discovered ran in the family: pernicious anemia, which prevents the absorption of B12 through the stomach. When I got my blood checked, my B12 came back low enough to warrant hydroxocobalamin injections. Boomer doctors hindered this process, believing my vegetarianism—not the long-standing family history—was to blame.
Feeling as though you have to explain, defend, and even fight for proper treatment is pretty familiar to many people who suffer from chronic illness—particularly those who, like me, are young and whose conditions are invisible. A major reason behind the delay of my diagnosis was my age; doctors had me down as too young to have developed pernicious anemia. I’m 21! How could I be tired?
Really, we have to stop treating youth and energy as mutually inclusive. Not only does it erase the experiences of young people who suffer from chronically fatiguing illnesses, but it feeds the narrative that life is a downward spiral from adolescence onward. The pandemic has highlighted the flaws in this youth-centric discourse which heralds your twenties as the best years of your life. With many of us losing out on our Golden Age university years, we’re having to look to the future with hope and optimism in order to stay sane. It really has to get better. COVID has also seen a rise in young people suffering from chronic fatigue due to the virus’s long-term effects, so society is going to have to reconsider its Hot Takes on what it means to be young—because it doesn’t always come with boundless energy.
If you’re reading this and you’re in your teens or twenties with a chronic illness, know that you aren’t alone. It can feel lonely, especially when the able-bodied people around you are getting on as normal while you’re struggling to leave bed. Don’t feel bad for all the little acts of self-preservation; canceled coffee dates and essay extensions are worth it if they mean you get to feel at least a little less shitty that week. If you’re reading this and you’re in your teens or twenties and you don’t have a chronic illness, then thank you—an understanding of chronic illnesses and improved access for those struggling with them won’t happen unless able-bodied people get educated and listen. Regardless of whether you have a diagnosed chronic illness or not, don’t beat yourself up for having off days. Just take a breather and keep it pushing.
By Alice Garnett
Photo by Ashley Armitage for Dazed Digital
