Work is a Chronic Illness

My time as a spoonie closely resembled my experience as a full-time worker.

I’ve been in the recording studio all week, narrating the audiobook for my forthcoming release, Unlearning Shame. And that’s meant I’ve been keeping dramatically different hours from the one my work-from-home, online-professor-slash-writer self has gotten used to.

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Instead of rolling out of bed around 9 or 9:30 am to lay out my yoga mat and languidly select a work-out video and a podcast to listen to while I complete it, I’ve been bolting upright in bed to the sound of my alarm at 7am, and dashing to complete my mourning routine. I’ve been throwing on clothing in a chaotic flash, gulping down water to relubricate my pipes before the recording session, and running to the train station to make it to the studio on time, often with an empty belly and bleary red streaks in my eyes.

Instead of carefully plodding my way through my email inbox and my writing tasks, taking the occasional pause for a walk or to cuddle my chinchilla Dump Truck, my ass has been in the chair from 10am until 5pm without much of a break, my eyes fixed to the iPad with my new book loaded onto it, my posture as perfect as I can make it to allow air to flow from my diaphragm and up to my throat. I have to project, with perfect pronunciation and artful modulation of voice, really feeling the words as I perform them, taking my mind back to the years described in the book when I was closeted, detransitioned, and subsumed by shame.

At the end of my days, instead of pushing myself away from the computer and padding into the kitchen to daydream while I cook food, I’m cramming myself onto the red line and beating back nausea as it lumbers me back home, dropping all my clothes and personal affects on the floor, and tiredly staggering around, addressing what messes I can before I run out of energy: feeding and watering the chinchilla, mopping up a sauce stain on the floor, flossing, emailing a few students, and then collapsing on the couch with a headache and a sour stomach.

I have almost no energy to move or to think. My eyes hurt. My head hurts. I’m constantly on the verge of puking. The room is spinning. Normally bouncing off the walls with the desire to exercise, try new things, and socialize, all I want to do is sit silently in the dark. I am incapacitated, in an inescapable way, by the demands of full-time work.

I had forgotten for a while that I am so profoundly disabled, because I have been able to build a life around my natural rhythms and my inarguable sensitivities. But for just one week, I’ve been thrust back into approximating something of a “normal” working life, and I can’t handle it. Not even remotely.

If I were to live by this schedule all of the time, if necessity forced me to work an actual full-time job with real, in-person, full-time hours, I would have zero energy for meal preparation, physical fitness, social outings, on-the-ground activism, or any of the random adventures that make life so worthwhile. In my schedule I’d scarcely find the time for doctor’s visits, tooth cleanings, trips to the DMV, birthday parties, conferences, runs to the post office, or any of the other small journeys that make it possible for supposedly “independent” adult life to run. My health, my relationships, my community, and my grounding in reality would dramatically collapse.

Sometimes I get down on myself for rejecting so many requests made of my time, though I know it is my demand avoidance that protects me from intrusion. I get to telling myself that I am far too selfish and unempathic, denying so many people meetings or the long email replies they desire, filled with careful advice. I worry that my future prospects will wilt entirely because I am not doing enough to chase after them. And when I have to retreat from the world to lay in the darkness and refill my well with hours of books and Youtube videos, I figure I must be pathetic, far weaker and more demanding than anybody else around me.

I’m Pathologically Demand Avoidant. It Rules.

But my experience having to work too hard this past week has reminded me of just how incapable of being exploited I really am, and what a gift it is that I’ve been given such clarity while also possessing the ability to set firm work-life boundaries. Because as I’m laid out here writing this, my body battered by hard work, I am strongly reminded of the days when I had a chronic, debilitating illness. All this hard work is making my body feel sick, in exactly the same way I felt sick when I had chronic anemia, a heart murmur, and a 103 degree fever that lasted for over nine months.

…

When I was sick, really sick, my boundaries were non-negotiable. But I tried negotiating them anyway. I knew that my fever and chills would typically strike at around 6pm or 7pm in the evening, and so I always made sure to get my exercise done before then. I’d walk for hours, listening to podcasts or taking phone meetings, having to pause on random people’s doorsteps to catch my breath and clutch my weary body.

To find the time for that exercise in the middle of the day, I had to shift some of my work into the night. I’d bundle myself in an electric blanket, crouch with my laptop perched on my knees while I sat on the floor, and bang out shitty drafts for shitty writing gigs until I couldn’t take it anymore. I kept granola bars and yogurt drinks laid out beside me, to primly nibble on while I worked. Frantic, up-tempo music by groups like Lazerhawk kept my weakened heart thumping. Coffee coursed through my bowels.

I had to spend a lot of time not moving, and cuddled up by blankets. My fevers knew no sense, and could not be argued with. It would be 90 degrees outside and I’d be sweating near a barbecue at my uncle’s house and it would strike, suddenly, requiring me to cover myself in layers, chattering my teeth. My doctors tested for all manner of chronic health conditions, but nothing came up positive. They could not find an explanation. My fever and heart murmur didn’t care. I kept getting sick, kept logging the high fevers in a diary to show to my physician, and my heart kept faintly, pitifully fluttering it’s valves.

I had to give up on a lot during that year. I had just completed graduate school, and though my advisor expected me to apply to dozens (if not hundreds) of tenure-track positions, I did not apply to a single one. He was mystified by it. He even asked me what he’d done wrong, like a parent grasping for a rationale when he catches his son using drugs.

I could have extolled many the things that should have been done differently, but the problems began with assuming I’d want to be a tenure-track professor. It was all the hard work I’d done in graduate school that had led me to this place, that had made me so starved and so tired. To this day I’m sure everyone in the department still blames me for having a bad attitude. They’ve never noticed how it’s all the neurodiverse students, students with trauma, and students from working-class and poor backgrounds who didn’t make it through the program, or made it through covered in psychological scars. If your body is not built for 60 hour work weeks for $14,000 a year, you are the problem.

I still had a job when I was sick. And it was during that miserably sick year that I first learned how to steal some time for rest and cover up my tracks. I’d drag myself into the office every Sunday and spend hours in the lab analyzing data and printing out reports, so that I’d have an impressive stack of work to bring to Monday afternoon meetings.

Those big stacks of work could look impressive, and implied days of work rather than hours. But sitting through the meetings drained me. I’d be on the couch thumbing through Game of Thrones for the third or fourth time, or rewatching The L Word yet again soon after. I didn’t even know I was Autistic back then. I just knew that when Peopling and Working got to be too much, I had to retreat from novelty and wash my brain over with the simply repetitive and familiar.

I saw specialists who mainly worked with dying patients. I had heart scans. I had so much blood drained from my body for tests that I couldn’t watch any movies about vampires for years. I got groped by a physician, in front of two wide-eyed medical students, and though I was normally a violent spitfire in the response to such things, I felt too physically tired to do or say anything. I took iron supplements. I slept for twelve hours per day. My partner at the time was out in the world, in acting in plays and drinking with his co-stars until 2am. I was nowhere. I was just trying to survive, and not making a mark on the world.

It was my Lost Year. Many neurodivergent people and chronic illness sufferers have one. I didn’t go to parties, attend concerts, travel, learn much of anything new, or make any new friends. I was 25 and supposed to be getting a jump-start on my life, but I wasn’t sure I’d be having much of a life at all. There was no ambition, and no hope either.

I was lucky at least to have a person who loved me, and I clung to my fantasies of that person holding me and loving me forever. He was out working on his own career. He was hungry and creative, and I was paying the bills, but I was also too sick to tend to a rich inner life of my own. This would curdle into a resentment that I also hated myself for having.

I started writing a fantasy story about a cunning rogue who sometimes was waylaid by mysterious spells of fainting and exhaustion; her dearest companion was a wizard with diabetes. Though I’d drawn up a map and charted out multiple different intersecting side-quests for my characters, the story didn’t get very far. In scene after scene, all I could describe was my protagonist journeying through the cold and the blistering heat, dragging her cart of supplies and her broken body, and then finding a hot spring or a soft straw bed to relax on. She never could do anything but rest and long for the days when she was a hero.

When she ran into her fellow peasants, they praised her for the courageous, impressive things she’d once done at some point before the story began, and cared for her in her illness. In my ultimate escapist, fantasy world, the ill could rest, and yet still wander, and still be valued when they no longer were of service to strangers.

…

The sickness of my overwork and the sickness of my heart were of the same piece. No doctor was ever able to tell a satisfying story of where my illness had come from. It was not Lupus or Rheumatoid Arthritis or Chronic Pain or Chronic Fatigue Syndrome or Cancer or any of the other even more terrifying things I was tested for. It was a disease born of overwork, the last parting gift that my graduate program gave me, and I had to figure that one out myself.

When I was in graduate school, I woke up every morning, grabbed a coffee from Metropolis on Granville, and then hoofed it to my office, where I sat in the dark typing and seldom speaking to anyone until long after the sky had gone dark. I’d walk home, maybe buy some random ingredients to throw together into a meal that was quickly eaten, and then fire up Billy Blanks kickboxing videos on my laptop.

I had a mattress on the floor and my dresser was a milk crate. I managed to put money into my savings account even on a $14,000 stipend because I ate and lived so little. I kept count of the days that I spent not speaking to anyone, sometimes, and the numbers horrified me. Books and my writing were my sole refuge. Looking back with 35-year-old eyes, it’s obvious why my heart stopped working, my skin jaundiced, and my blood became so thin it was more pink than red. I was killing myself with work, the work was a sickness. It made me sick, and then the sickness finally forced me to stop.

…

I am one of the very few spoonies in this world who was fortunate enough to recover from my chronic illness. Eventually even I had to admit to myself that working a full-time job, doing consulting work, and trying to exercise for hours every day while physically ill was not working. The truth became undeniable. I laid down and stayed there. I did less and ate more and abandoned goals and changed the entire course of my life. If you’re reading this, you probably already know that whole story. Making peace with the fact I’m incapable of working hard (and offering support to others in the same boat) has kind of become my whole thing.

In the years since that illness, I can honestly say I’ve rarely worked more than 20 hours per week. Most things that are worth doing can be done in three or four hours per day, four days per week. But protecting that schedule has itself been quite the challenge. I push meetings into “next” week until they disappear from my calendar entirely, I dodge certain expectant eyes, and I show my face in the places where I know it will seem the most impressive to the higher-ups and buy me more time.

I write fast and I think fast, luckily, so it looks like I've done months of work in a few weeks. I’m still putting together big stacks of reports and dragging them to my job, making it look like I’ve been working very hard. I’m vague whenever I reject a request, never giving people enough information to argue with my limits. Like so many other neurodivergent folks, I have to be a cunning rogue, lying, cheating, and stealing my way to health.

My body has recovered because I was able to do all of this. I am physically strong now, and more capable of the real work I value than ever before. I can stand outside in the bitter cold during protests, thick oxygenated blood and layers of muscle keeping me warm (thanks, testosterone!). I spent all four nights of Midwest Furfest shaking my ass in full-body latex until at least 2am, and often got into more shenanigans after.

When I see someone being harassed or physically assaulted at the club or on the street, I can throw my body in their way, and stand firmly enough to push attackers back. No longer depressed and isolated, my mind bubbles with ideas, and the writing comes even more easily — I have about nine finished essays in my queue right now, enough to ponder upping the frequency of my release schedule.

But I won’t. Because I don’t want to overwork myself. And I know that my energy can be stolen from me at any time, and next time, it might not ever come back. After you have been disabled, you know that no ability should ever be taken for granted, and that you can’t hang all your life’s meaning on your ability to produce. It can and will one day go away, and then you’ll only be left with yourself. I have been scrimping and saving and planning for an early retirement for years because I know that one day I’ll be cold and curled up on the couch, pinned down by some inner weakness again. I do not doubt it’s arrival. I know that it is coming for me. That’s why I dance so hard right now and work so little.

This week spent in the recording studio was a much-needed reminder of my limitations and how powerless I am to deny them. I finished recording Unlearning Shame a day and a half early; we had four days booked in the studio and got it done in two and a half. The director complimented me for my precision and speed, said I was going to set a record. There goes my academic high-achieving addiction again. I didn’t tell him that I became so good at narrating my work because I’ve spent thousands of hours alone, reading to myself.

A photo of me recording the audiobook at ARU Studio.

I managed to get this work done swiftly because I knew I’d need that extra day and a half to recuperate. I’ve been in my sweatpants watching recordings of the American Psycho musical over and over and eating ice cream. My throat is sore from all that speaking. My tired eyes can’t focus as well as they usually can. Moving around the house this morning, my breathing felt a little thin. I turned down an invitation to go watch anime and eat ramen with a friend. There are holiday parties coming up and mandatory graduation events at my work and I need to do nothing, and be nowhere, harnessing the energy I require to be a person again.

Working full-time is a sickness. And not just for especially sensitive people like me. The friends I know with full-time jobs are tired nearly all the time, and have had to give up on so many of their passions and fulfilling pursuits. Over the years some full-time workers I know have become a bit dull-eyed and distant, no passion in their voice, a ghost of their younger selves. They assume it is because they are growing “old,” but I’m older than many of them, and many people older than me are similarly able to bounce off the walls.

We have energy if we get enough sleep, if we eat robustly and eagerly, and if life is filled with shared wanderings that we can look forward to. We need repetition, and comfort, and rest, but also ample space to dream, and the power to bring some of those dreams into reality. So many people under capitalism lack all of those things. Their jobs are a chronic illness they must cradle, manage, and make endless sacrifices for every single day.

There is so much they can’t do. They don’t go on dates with their spouses because they’re falling asleep at 8pm. They’re behind on doctor’s appointments and haven’t visited their siblings for years. They’re too weak and weary to travel, to volunteer, to meet anybody new. All they have it in them to do at the end of the day is collapse in front of something familiar on the TV. And it is so normal that nobody even considers it a sickness.