My Chronic Illness Makes My Bed a Haven—and a Prison
When I was diagnosed with Crohn’s disease at 19, for better or worse, my bed became a catch-all for place of work, place of rest, and everything in between.
Photo courtesy of Ione Gamble
As we brace for 2019 and stack up our resolutions, Broadly is focusing on finding motivation for the hard tasks that await us—like getting out of bed. So, throughout January, we're rolling out Getting Out of Bed, a series of stories about all things related to rest and resilience. Read more here.
When author and founding member of the Slits Viv Albertine needed comfort in times of darkness, she turned not to a family member, child, or friend—but to an inanimate object: specifically, her bed.
"It asks for nothing, never judges, just holds me and is comforting through the good times and the bad,” she wrote in her 2018 memoir To Throw Away Unopened. In it, Albertine engages with Joan Didion’s 1968 essay “In Bed.” Like Albertine, my bed can be a source of comfort. But my place of rest can also feel like a prison.
In the first five years of my twenties, I’ve spent much more time confined between mattress and duvet than I ever anticipated growing up. I was diagnosed with Crohn’s disease, an incurable autoimmune condition, at the age of 19. Overnight, I swapped my college bar for early nights, under the covers.
One of the main symptoms of Crohn’s disease is chronic fatigue—meaning that I often feel like a pensioner trapped in the body of a 25-year-old. While trying to navigate life as an adult, my bed became a catch-all for place of work, place of rest, and everything in between. “Humans take to their beds for all sorts of reasons”, writes Albertine, listing off a myriad of reasons that have all related to me at some point. “They’re overwhelmed by life, need to rest, think, recover from illness and trauma, because they’re cold, lonely, scared, depressed—sometimes I lie in bed for weeks with a puddle of depression in my sternum—to work, even to protest.”
Like my own experience, Didion’s place of rest was more frequently inhabited out of necessity, not pleasure. In her essay (from which Albertine borrows the name for her passage), Didion writes about being confined to her bed up to five times a month due to debilitating migraines. “That in fact I spent one or two days a week almost unconscious with pain seemed a shameful secret, evidence not merely of some chemical inferiority but of all my bad attitudes, unpleasant tempers, wrong-think,” Didion writes.
I know the shame that Didion talks of. I’ve felt the siren pull of my bed, calling to me, and felt the guilt that comes from slipping into its embrace. Crawling into bed in the middle of the day feels like a well-earned hug, but it also feels like conceding to the enemy. My mental health adviser urges me to enter my bedroom for strictly sleep only. But it’s hard to ignore the allure of bed when you ache from throat to upper thighs.
Here’s the problem. When you spend a lot of time in bed, whether for pleasure or under duress, the whole world—yourself included—considers it lazy. Albertine writes of telling her doctor that she can "easily sleep for eleven or twelve hours at a time." The passage goes on: "She wasn’t interested, just said ‘Lucky you,’ through gritted teeth."
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The symptoms of my Crohn's disease are largely invisible. If you saw me, perhaps you’d attribute the ever-present dark circles under my eyes to the millennial condition of never switching off and always being on the clock. To the untrained eye, my illness doesn’t exist. For most people my age, spending a morning lounging in bed is a small luxury. But if I make it out of my bedroom before noon, that’s a miracle. Most mornings, my eyes roll back into sleep unwillingly. I’m trapped by the limitations of my own body.
But even if I haven’t been able to drag myself out of the bedroom at all, at least I can turn my place of rest into a place of work. It may not be the Instagram-ready workspace most now associate with femme entrepreneurship, but I’ve built a fledgling business and inclusive community from between cotton sheets. Most of the time I spend in bed is heavily rationed into tasks. I’ve filed thousands of Google docs for future articles from the secrecy of my bedroom (including this essay). I’ve created eight print issues of my zine. I’ve even created imagery that deals with themes such as femme hysteria and the bedroom. I’ve taken countless Skype calls—always filmed from the chest up, as to not reveal the duvet straddling my waist.
When I’m feeling guilty about how much time I spend in bed, I reach for Albertine’s book or seek out other essays such as Didion’s. It reminds me that despite our culture urging us to never switch off, many of the most brilliant minds have seeked solace from their place of sleep. “Brian Wilson went to bed for three years. Jean-Michel Basquiat would spend all day in bed. Monica Ali, Charles Bukowski, Marcel Proust, Elizabeth Barrett Browning, Tracey Emin, Emily Dickinson, Edith Sitwell, Frida Kahlo, William Wordsworth, Rene Descartes, Mark Twain, Henri Matisse, Kathy Acker, Derek Jarman and Patti Smith all worked or work from bed and they’re productive people,” Albertine writes.
The most difficult part of being partially bed bound is, as Didion puts it, accepting that illness is “something with which I would be living.” Life lying flat, I sometimes feel like I’m stagnating. I’m forced to accept that my condition is unlikely to change or improve any time soon.
But just because my career has been built between the four walls of a bedroom, not my boardroom, doesn’t mean my achievements aren’t valid. I’ve learned that it’s important to check out of so-called normal life every now and again. Chronic illness has taught me to be kinder to myself, and stop relentlessly focusing on the arbitrary career goals of myself and my peers. Life is for work, but it’s also for rest, relationships and everything in between—and your bed is always there for you.
My relationship with my bed may be one of love and hate, but like Didion, I’ve learned “to live with it, learned when to expect it, how to outwit it, even how to regard it, when it does come, as more friend than lodger. We have reached a certain understanding.” My dependency on my bed may be uninvited, but it should not be stigmatized.