Invisibility Isn't All It's Cracked Up To Be

As a kid, I thought it would be awesome to be invisible.

Like any superpower, it had its theoretical perks. I could spy on my parents while they wrapped Christmas presents. I could sneak into R-rated movies. I could stay up past my bedtime and watch “Law & Order.”

As an adult, ironically, I have an invisible illness–– and the invisibility thing isn’t exactly what I thought it would be. “Invisible” refers to diseases and disabilities that can’t easily be seen or noticed from the outside. They’re illnesses that ravage your insides but leave you looking just “normal” enough for everyone else’s standards that it’s sometimes hard for people to believe you’re really sick.

Wearing hoop earrings to my infusion because you can be sick but still look fLy~*

I don’t have a walker to denote that I’m in ill health. I don’t have an oxygen tank, or a big scar. Some days the circles under my eyes may be a bit more pronounced, or my prednisone may be making my hands shake, but for the most part I look like your run-of-the-mill 24 year-old girl. For this I am blessed. I don’t need a walking aid, or something to help me breathe. I haven’t lost a worrisome amount of weight. But that’s where things get tricky–– because I am still sick, appearances be damned. And sometimes when you don’t look as sick as you are, people have higher expectations of what you can and can’t do.

Even though you can’t see it with your eyeballs, on a bad day, I may be too weak to carry some bags up to my apartment without becoming super winded. Standing for long periods of time may be difficult for me. My stomach may be in so much pain it’s hard to focus. But because you can’t physically see it, I tend to keep it under wraps as much as I can–– which sometimes means pushing myself to do too much because I want to feel as healthy as I look, and I’m bitter that I don’t.

The biggest problem in all of this is that it’s often hard for people to believe that patients with invisible illnesses are actually sick. It’s easy to be skeptical of something you can’t readily see, even if it is real (like GHOSTS, guys. Or aliens.) This leads to stress for the sick party. What if your work gets fed up that you, a seemingly healthy person, has to keep missing shifts because you’re sick or have yet another doctor’s appointment? What if a friend is upset that you missed out on an important event because of your illness when you look perfectly fine? What do you say to the acquaintance who drops the classic line “but you don’t look sick?”

Yesterday was a really bad pain day for me–– one of my safe foods backfired on me and I was feeling dehydrated, shaky, and in immense abdominal pain. Luckily when I got on the bus to go home, there were a few seats left, so I snagged one. Being able to sit on my commute home made a huge difference, helping me feel not quite so faint. But a middle-aged woman did heavily sigh when she saw me seated while others were standing. I understand where she’s coming from–– I look like a kid, aren’t I healthy enough to stand and let a 40-year-old woman take my seat? But the problem with those kind of assumptions is that they aren’t always true. You know what they say about assuming? It makes an ass of you and me. And my ass is the one that’s gonna go on that bus seat, lady.

So in honor of all those struggling on through the invisible illness game, try practicing some judgment-free empathy in your own life and hopefully, over time, that good karma will come back your way. If you see someone who you assume is healthy using a handicap spot or taking the last seat on the bus, don’t let your mind automatically go to a place of assumptions. If you have a coworker or friend who’s always flaking because of illness, try not to question their motives or look for “signs” that they’re really sick. “Sick people” come in all shapes, sizes, ages, and ability levels. They look just like you–– they just also happen to have a slightly overrated superpower.

I Like Getting Tattoos (Or, Having Control Over Your Body When You Don't Have Control Over Your Body)

I like getting tattoos.

Other things I enjoy include piercings, dying my hair colors not found in nature, and spending far too much of my disposable income on whatever makeup a Kardashian is currently peddling on Instagram.

So what, am I having a late in life rebellion against my parents? Do I just like my hair to look like sherbet because I’m really hungry?

In the last year, I've rocked roughly 6 hair colors.

I’ve thought long and hard about why I like to make my body physically fun-looking in unconventional ways, and the best answer I can come up with is control. Control is a really un-fun sounding word, but to me it’s an exciting concept.

Chronic illness means rarely having control over your own body. It means you can be trucking along in life, doing everything your doctors ask, and you may still encounter a shit storm of symptoms at a moment’s notice. It can make you feel pretty powerless–– everybody wants to talk about how “your body is your temple,” but what happens when your temple is tearing itself down for no good reason?! Screw this temple, honestly. I got a broken temple.

Two hair colors at once like "I'm not a real adult"

So how do you take back your own body? For a lot of people, that’s where body modification comes in. There’s a lot of different levels to body modification–– everything from ear piercing to full body tattoos are included. For some people, it’s a whole lifestyle. I’m a pretty small-grade practitioner of it myself; I only have a couple of piercings and a few tattoos. But throughout history, whether you have a sleeve, or gages, or fuchsia eyebrows, body mod has meant something kind of cool: self-empowerment.

If I can’t control the chaos going on inside my temple, there’s something empowering about being able to decorate it as I please. It’s also nice, on an infusion day or a trip to get blood work done, to look down and see the tattoos I’ve chosen looking back at me. When I was a little kid and I was having a bad day, my mom would draw a smiley face on my index finger as a reminder at school that things would be okay. My tattoos feel like the big-time version of those little smiley faces drawn in pen.

In the process of getting my favorite tattoo–– it's a big daisy.

And when you’ve been bedridden or housebound with a flare for a while, something like turquoise hair can make you feel like a glamorous unicorn in a way nothing else quite manages. It’s a great (and slightly less permanent) way to take charge of putting a smile on your own face. And while makeup doesn’t quite fall into the category of modifying your body in any permanent sense, I tend to include it in the category of aesthetic changes that lift my mood. Trying a new spidery eyelash trick or a bright purple lipstick can make me feel newly human on the outside even when my inside is like “meh, ow, take a nap.”

So if you have a chronic illness of your very own, might I suggest treating yourself to a new foundation that makes you look more glowy than you feel. Go buy a box dye and turn yourself into a Rainbow Brite fairy princess. Try whatever trend makes you happy. Because in the grand scheme of control over your body, you’ve got to take it where you can get it. I may go to bed at 8 PM tonight, but at least I’ll do it with sparkly new nail polish on, and that was enough to make me feel like me today.