woman happily napping on a desk with a cat on her shoulder

So What Do You DO All Day? by Mi Nguyen

Image by Qian Shi

So What Do You DO All Day?

Spoiler alert: Nothing.

Health is a full-time job for people with chronic illnesses, and that’s okay.

Our value as people is not defined by how much we “contribute” to society. For some reason, this is a difficult thing to grasp for many. We don’t prioritize rest the way that we should.

Existing is enough.

The number one question I get when I meet new people is: “What do you do?” or “How do you spend your time?” I often try to beat around the bush by saying I’m “taking a health break.” Most respond to this quizzically. There is an air of guilt and shame when you’re not able to present as an overachiever, or as someone hustling towards big goals. There is a fear or sense of embarrassment about seeming lazy, weak, apathetic, or unambitious.

My goal is to stay alive.

That means I sleep most of the time, but it also means I manage medications, doctor’s appointments, testing, treatments, and side effects. The thing about incurable diseases, is that this is all trial and error. Waiting for an appointment can take months. Treatments and medications aren’t guaranteed to be helpful and often come with an array of side effects. I keep up with the latest research and medical trials. It ends up taking up almost all of my time.

I require absurd amounts of sleep to keep my inflammation down. If I don’t, then I can feel my brain stem begin to swell. Then, everything in my body starts going awry (more so than usual), and so I chug salt water and zap my ears with electricity with little to no avail.

Sleep is golden for people like me. Don’t take it for granted.

Dedicating all of my time and energy to wellness doesn’t mean that I don’t have interests or career goals. Of course I do. I just don’t have the capacity to think about, or pursue them at the moment. And yes, that’s yet another thing that I grieve daily.

I’ve spent about a year completely committed to sorting out my health and I really can’t say when this journey will wrap up. I might die before it ever does. Until then, I’m taking my naps.

Mi Nguyen (she/they) is a Vietnamese-Cambodian, kink-positive disability writer and digital artist. Mi was born and raised in Little Caribbean, Brooklyn, and dabbles in the local NYC hip hop scene, producing events and doing PR work. Mi was diagnosed with myalgic encephalomyelitis, POTS, fibromyalgia, and a few other conditions in their early 20s. Now their work focuses on raising awareness about under researched chronic illnesses and disability rights. 

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