How my chronic illness changed my approach to work

At first, it can feel like hunger, fatigue, horniness, or undue excitement—an adrenal, bodily buzzing that increases in volume until it drowns out everything else. It escalates quickly from a curious sensation to an edict: food, now. The world fades away. I feel wrung out and shaky, a discarded rag. That 10 a.m. conference call never stood a chance.

Disabilities are isolating, because no matter how poetic the metaphor, it’s impossible to live in someone else’s body. I was diagnosed with type I diabetes at age 14, so I’ve never known adulthood without constant vigilance over my body. I overcame a lot of anxieties about appearing “diseased” out of sheer laziness. I can no longer be bothered by a trip to the bathroom to inject after a meal, or to shield my fingers from prying eyes when I need to get a blood sugar reading. (I’m in good company: I once read that Sonia Sotomayor, who also has type I, gave pre- or post-meal corrective doses through her Supreme Court robes.) 

Society functions because we follow spoken and unspoken rules—if you take the last of the office coffee, brew another pot. Mute your headset mic while you savage a piece of fruit leather. In a workplace, as in many other spaces, disabilities interfere with our ability to do as expected. The social contract breaks down—anarchy by way of hypoglycemia—and when the issue is invisible, it can be difficult to justify the metamorphosis. To the woman one cube over, profuse sweating, babbling, and disorientation looks like unprofessionalism; to the person shaking out glucose tablets, it feels like armageddon.

At its best, an invisible chronic illness feels like mischief managed: a post-meal measure that’s perfectly within range, remembering to pick up extra refills at the pharmacy a few days before the out-of-town conference, an imposed officiousness that imparts the same satisfaction as a color-coded Outlook calendar. Managing a major health issue has made me the most detail-oriented employee you could imagine. Every day necessitates hard data.

But, inevitably, the best-laid plans break down. A virus or infection will make sugars run high, which could mean nausea, ketones, and additional medical complications. Stress will turn your body wacko, the same dosages rocketing you too far in one direction. The indignity of leaving a meeting abruptly to quiver with a glass of juice isn’t horrible just because of how you feel—a fervent gulping followed by the need for a four-hour nap. It’s the embarrassment that smarts the most. 

And that’s before the doltish questions, a favorite subject among my diabetic friends. “Can you eat salt? Are you allowed to have that donut?” “Were you fat as a child?” some have asked, as if this illness is a moral failing. People feel entitled to discuss my body in a way that less visible maladies may not elicit; even if I lean over to inject medicine through my shirt as subtly as possible, I’ve had people interrogate me with questions about what I’m doing, what age I was when I was diagnosed, and what sort of diet I follow. Mostly, I interpret it as well-meaning, the same way people touch pregnant women’s bellies without permission. (That’s not okay either, but on optimistic days, I try not to resent the role of diabetes ambassador, informing an ill-informed public.)

Beyond the day-to-day, the few mornings when I come to work bleary because I’d crashed low the night prior, diabetes has driven many of the decisions about which jobs I take and the shape of my overall career. Out of pocket, insulin costs anywhere from $90-$200 per vial. (For context, I use about four per month. My insured medication and supplies total about $45 every few weeks.) Then there are the lancets, the test strips, and the pen caps, the specialist visits with endocrinologists, ophthalmologists, and podiatrists. 

In self-pitying moments, I’ll look at full-time freelancers and think, “I could do that, if insurance didn’t cost $550 a month, and insulin prices were regulated, and my pancreas didn’t squat in my body like a free-rent tenant.” It’s hard to say whether or not I’ve embraced a traditional full-time gig precisely due to diabetes, or if I’d gravitate to stability and routine anyway, but the alternative is unimaginable. In any other situation, I’d be living off a GoFundMe, my family, or whatever government aid hasn’t been dismantled in recent years.

I’m grateful for my publishing job, which is mostly fulfilling, and the stability of a 9-5 workday. But I wonder what I’d be doing if I, like others I knew, could have taken contract work, or internships, or gone to clown school. What does it feel like to inhabit a body without any glaring flaws, whose daily functions are predictable? I can’t know, the same way you can’t accompany me to the shores of Lake Hypoglycemia. Frankly, I wouldn’t want you to, even if it meant being better understood.

Until Medicare for All, bionic organs, or a chance windfall, I have my hoarded stash of emergency candy and the well-stocked pharmacy down the street.

I measure my days like most other people with desk jobs—in meetings, to-do lists, and the quest for inbox zero. I’ve logged my years in retail, and I know I’m one of the lucky ones. I can get up from my desk chair and pilfer peanut M&Ms from the free cache without anyone screaming at me. I can call in sick without worrying about making rent. And I can trust a few coworkers to help me out of sticky situations, to notice drained color or belligerence before I embarrass myself blacking out on an author call.

There’s no use wallowing. Empathy goes a long way, but so would policy. Understanding bosses go a long way, but so would laws to regulate the pharmaceutical industry. I don’t have all the answers, but I do have a desk drawer full of snacks and a low A1C. For now, that’s enough.