At the start of lockdown, a friend texted that a party she was looking forward to had been canceled. I stared at the blue bubbles as I searched my brain for the correct response. “I’m sorry, what a shame, that sucks,” something like that. What I thought was, Who gives a shit? I might be a bitch. It isn’t pandemic-specific; I’ve been chronically ill for 23 years and long before social distancing and stay-at-home orders, I scrolled through Twitter and Instagram every day, thinking Fuck off, fuck off, fuck off, even about people I like.
I envied everything. Someone went to London, someone went to New York, someone went to Starbucks. Someone published a book, someone published an essay, someone published a newsletter. Someone got a master’s degree, someone got their driver’s license, someone got a good night’s sleep. Sometimes I draw a line. I unfollowed a Facebook friend who kept posting about how stressful it was to move to her new country mansion. Other times I poke the bruise. I watch the Instagram Stories of an actress my age who looks ten years younger, vacations five times a year, and receives tottering piles of free skincare. I want to slap her luscious face.
I get that this is wrong. Unattractive. Ungracious. Immature. LIFE IS NOT A ZERO-SUM GAME, people yell on social media a lot, meaning someone else’s good fortune doesn’t put you at a disadvantage, so shrug and suck it up. “It isn’t real life” is another thing people say, emphasizing that social media users edit out all their imperfect moments. But I’m envious of low-stakes bad experiences, too: commuting in 8 a.m. traffic, getting the wrong coffee order on the way to the gym, burning an ambitious side dish for dinner with friends. There’s a small, specific joy in being part of the world that you don’t notice until it’s gone. Other people—amateurs—know that now.
When the world shut down, they started complaining. A bit about politicians shaking hands with Covid patients, nurses wearing trash bag aprons and parents educating their kids on top of working from home. But more about missing concerts, festivals, and vacations. “It’s now also a pandemic of human disappointment,” one author tweeted. The compassionate reaction, I imagine, would be to feel empathy for people unaware life could be like this: filled with cancellations, loneliness, and frustration. My reaction was How the hell could you not know? Sick and disabled people have shared our stories for decades, always suspecting that, at best, able-bodied people thought “bummer” and went about their days.
Before the pandemic, I could go months without leaving the house except for medical appointments. During it, I still do. I don’t know when I’ll move out of my mom’s place, learn to drive, or shower every day. I haven’t entered a shop since 2020, had a vacation since 2009, or been to a party since 1998. I can’t remember what it feels like to be part of a group crowding into a restaurant booth, clinking glasses and laughing until other patrons stare, or strolling through town, walking from one store to another without my back collapsing into spasms. Everyone from family members to internet strangers has told me to keep my chin up, but when they were briefly in a similar position, they seemed to expect me to drop to the ground, keening.
Within a few months, though, Instagrammers bounced back. They licked vanilla sprinkle cones at socially distanced picnics, played tug of war with blurry-tailed puppies, and stood in front of freshly painted front doors, new keys swinging from their index fingers. The envy that Covid had quashed flared up and I found myself scrolling and swearing once more.
The term for looking at other people’s lives and finding your own disappointing in comparison is FOMO. Fear of Missing Out. In his ebook The FOMO Sapiens Handbook, venture capitalist Patrick McGinnis offers tips for counteracting the phenomenon. They include asking yourself: “Is this opportunity even available to me?” which sounds harsh, but at least acknowledges something most self-improvement advice skims over: you might not be able to complete all of the goals other people check off—or any of them. It’s tempting to blame Twitter, Facebook, and Instagram for making us feel bad, but contrary to alarmist headlines, a study in the Journal of Social and Personal Relationships concluded that FOMO isn’t caused by social media. When you’re missing out, you already know.
An analogue selfie from my aborted attempt at university in the late ‘90s shows my roommates and me shiny with glitter and fresh from screaming “WE ARE FAMILY” on a nightclub dancefloor, ready to flop onto the carpet in our shared corridor and swap gossip until 3 a.m. Two months later, staying at my then-boyfriend’s house for the summer, I felt so weak after having a bath that I fell over in the middle of pulling up my tights. I didn’t know how to explain that I could no longer rely on my body to do things I’d always counted on, like walk or stand up. After half an hour and a large Coke my adrenaline kicked in, but not for long.
Back at college I couldn’t sit through a lecture or read a book without my eyelids drooping closed. I went home for a few days to get better and never left. After years of tests and assessments, I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), an incurable condition that causes muscle pain, lack of stamina, and disabling fatigue. On good days, I have choices—write or cook dinner, bathe or walk to the end of the road. On bad days, my brain fills with fog and my legs feel like jelly. I see squirrels leaping outside my window and want to cry with envy. Unable to form words into sentences or force myself to fall asleep, I crawl into bed after breakfast and stare at my yellowing wallpaper, each tiny smudge a familiar sight.
I take some twisted comfort in knowing that my type of missing out is scientifically proven to be the worst. In a 2015 study, “The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” researchers concluded that people with ME/CFS had a “significantly lower” quality of life than the general population and the lowest of all compared conditions, including chronic kidney failure and multiple sclerosis. Not being able to do most of the things you want might be a minor form of suffering, but it’s unrelenting in its monotony.
The trouble is that time is a zero-sum game. Time spent resting in the hope of feeling better is not time well-spent or time I can ever get back. Albert Camus wrote in his notebook that “being active is still wasting one’s time, if in doing so one loses oneself,” but I’d be willing to risk it. Other people have lost a lot more than I have. A home, a country, their family. My losses are theoretical: memories I thought I’d have but don’t, ways I assumed I’d participate in the world but haven’t. I’m too scared of another post-viral illness to voluntarily leave the house for anything other than a short walk, but if the pandemic ended tomorrow, I couldn’t book a vacation, accept a full-time job, or become a whole new person.
Sometimes planning seems like a way out. For years after I got ill, I clipped newspaper ads for journalism training courses and summers working in New Hampshire that I kept until the print faded. I read The Secret and made a vision board to “manifest abundance” that featured palm trees, groups of laughing friends, and The New York Times bestsellers list. To my genuine surprise, this didn’t change my life. A therapist once told me that productivity is a capitalist construct, but she also had a PhD, owned a home in the fancy part of town, and framed a photo of herself at the top of the Sydney Harbour Bridge climb. It’s hard to see a worthwhile existence as one in which you don’t check off accomplishments, especially in a world that made The Bucket List a number one movie, spends $45 billion a year on organizational apps, and ensures 1001 Movies You Must See Before You Die is never out of print.
When my corpse is rotting, anyone who counts how many films I watched, countries I visited, or essays I published is going to look like a real loser, but the thought of racking up those numbers still nags at me while I’m alive. I struggle to understand why it bothers me, what I think I’ve lost exactly, then I read how the originator of FOMO, marketing strategist Dan Herman, defines the term on his website (fomofearofmissingout.com). “A clearly fearful attitude towards the possibility of failing to exhaust available opportunities and missing the expected joy associated with succeeding in doing so.” In other words, I want the happiness I think selling a book or lying on a beach with my imaginary besties would bring me and I can’t work out a shortcut.
Some people swear by mindfulness, where you inhale and exhale as you focus on the present moment, but you’d have to be pretty desperate to consider that a substitute for a full and interesting life: breath. I once saw another chronically ill writer tweet that she loves her “small, rich life” and wanted to vomit. I don’t love my small life; I don’t consider it rich and I don’t want to say I do and risk hundreds of people who have no understanding of chronic illness retweeting it with a heart emoji. In my early twenties, at the start of a comprehensive and ineffective exploration of complementary therapies, I went to bed early, drank chamomile tea, and listened to Radio 4’s Book at Bedtime while my college friends screamed “WE ARE FAMILY” and swapped gossip until 3 a.m. without me. I told myself life wasn’t worse, just different. It was bullshit.
For a couple of years, I went to a yoga class for disabled people. Once I arrived early and started stretching while a woman with a temporary shoulder injury set up her mat on the other side of the room. I heard snatches of conversation as she talked to the man next to her, who had M.S. Her dad had it too, she told him. “At first he was angry but you have to accept where you are in life, don’t you?” My fingers clenched into fists. Do you? Isn’t anger a logical and proportionate response to things turning out worse than you imagined?
In the last three years, it’s certainly seemed like it. As bitter as I feel about other people’s ignorance at how much missing out is possible, their horror at being asked to shut down their lives for a few weeks implies that anyone would react badly to circumstances like mine. I know luck and loss aren’t equally distributed, but I still feel entitled to some kind of quality-of-life compensation or a public apology from everyone having a better time than me. It would be easier if I believed in God so I could rage at him and leave my acquaintances alone.
I have glimpses of perspective, times when I’m not self-centered or petty and recognize my good fortune in having a home, parents who love me, and a cat who thinks I’m OK. This isn’t so bad, I tell myself. Dead people would kill to have this life. Then I see or hear or think about someone doing something I want to do but can’t, perhaps ever, and I find myself scrolling through Twitter and Instagram thinking Fuck off, fuck off, fuck off, even about people I like.
Perhaps it would be better to take the long view: everything is pointless. In a universe with over 100 billion galaxies, one existence can’t possibly be consequential. If I were religious, I might subscribe to the idea that life on earth isn’t the main event but a prologue for the afterlife where the real fun happens, or believe I’ll keep coming back in one incarnation after another until I finally reach nirvana. Then there’s the possibility that we’re not really living but part of a simulation, cosmic computer characters manipulated by all-powerful controllers, where nothing we do (or don’t do) matters because none of it is real. But it feels real, so that’s no consolation. I find quantum mechanics more reassuring. The daughter universes theory posits that every possible outcome of a situation takes place, each in its own universe. Hunched over my laptop, half-asleep, I imagine multiple versions of myself in unseen alternate realities, surrounding me like radio waves, stretching into infinity. At least one of those bitches must be having a good time.