But You Don’t Look Sick: Invisible Illnesses

There’s a huge push right now in literature to expand readers’ understandings of POVs outside of their own experience. (THIS IS A GOOD THING.) Thus, many people are now actively seeking out stories and perspectives they might otherwise not even know existed. (THIS IS ALSO A GOOD THING.) And so, in the spirit of that, I wanted to add my tiny little voice into that chorus and talk about a perspective that’s not as apparent to the outside world as race or gender or ethnicity or outward handicaps.

Invisible illnesses

These illnesses can take many forms. Some of them are mental. Others are chronic. I happen to have a few of both. Of course, if you saw my profile pic or passed me on the street, you’d never know about either. And why should you? People I’ve known for years still don’t know. But should you wish to take a glimpse into what’s beneath my “normal-looking” exterior — hey, maybe even write a character with an invisible disability or illness! — I’d like to tell you a little about living with my disabilities.

(Quick ground rules: I [obviously] do NOT speak for all illnesses, disabilities, or conditions. I can only speak for anxiety, bipolar 2 disorder, Asperger’s, endometriosis, fibroids, and a small assortment of others including food allergies. If you want to learn about a specific illness or disability not listed here, you should probably talk to someone with that. Okay? Here we go.)

1. People will usually assume I’m not actually sick.

This is just a fact of life, folks. If someone can’t see something with their own two eyes, they usually don’t believe it at first. Telling people about one (or all) of my illnesses usually goes something like this: denial (“What? Nooooo, you look so good/normal/other-words-that-don’t-mean-sick!” or “But you’re so YOUNG!”), confusion (eyes darting to face, trying to find some sign of “disabledness” that they missed), and then maybe a little “Oh, so THAT’S why you do that?” or “Hey, I think my cousin’s aunt’s husband had something like that!” which culminates in one of the following reactions.

Fear/Panic

Awkwardness

Meh-I-still-love-you

I’m okay with most of these reactions. Obviously I don’t like it if telling someone about disabilities drives them away, but hey, now I know I didn’t want them in my life in the first place. Problem solved. The reaction that infuriates me is when people want me to prove it and start asking trivia questions. (NO, I said BENIGN tumors, not cancer.) If they’re legitimately interested in learning more, I’m totally down for answering questions. What I’m not down for is an interrogation in which they try to catch me in an insidious lie because I am OBVIOUSLY faking to try and get out of doing things.

One of the worst reactions I ever had was in my 2nd year of college. I was so sick that I couldn’t hold down a job and was barely making it to half of my classes. I’d already worked out things with my professors, but I needed the scholarship they had taken away (ironically BECAUSE of my illness) reinstated. I spent an hour getting ready — makeup, hair, nice clothes — so that the financial aid counselor would take me seriously. But as soon as I walked in the door and told him I was there to ask about disability benefits, he looked me over and said, “What? You don’t look sick enough to receive those.” Cue 2-hour interrogation . . . followed by life advice. (“You’re just going to be a housewife anyway; wtf do you need your degree for?”)

Yeah. That.

2.  There are good days and bad days.

This is true for every single one of my disabilities. I can be the life of the party one day and want nothing more than to hide under the covers for eternity the next.

I can do an intense workout at the gym and feel like a total badass one day . . . then be screaming in pain on the floor the next day if my endo starts flaring. (But seriously. I used to get sent home regularly from school because I’d collapse on the bathroom floor. A few times, I actually prayed for death because it would hurt less.)

Some days I can run miles. Some days I can’t walk.
Some days I can talk to anyone for hours. Some days I can’t even make eye contact.
Some days I’m so restless I just want to go out and do ALL the things. Some days the idea of setting foot outside my house gives me a panic attack.
Some days I laugh at the hand I’ve been dealt. Some days I can’t stop crying.

Circumstances are tricky things. If you see someone with a “disabled” parking sticker and you don’t think they look disabled, please just give them the benefit of the doubt. Yes, there are unscrupulous people who lie to get those, but oftentimes people with invisible illnesses get them so they can still go grocery shopping even when their legs decide not to work or their joints ache like nobody’s business.

If you have a friend with a chronic illness — or really any invisible disability — please don’t judge them too harshly if they keep having to cancel plans with you. For a lot of us, there is literally no way to predict when we’re going to have a good day or a bad one, and the symptoms often strike without warning. (Oh, and it’s not limited to just “days” — sometimes we have bad months. I’ve had to stay in bed for up to 3 months before. Not pleasant.)

3. No matter how long it’s been, I still get overwhelmed sometimes.

When I was first diagnosed with my various maladies, the first thing I felt wasn’t so much fear as it was relief. Finally, FINALLY, I had an answer to what was wrong with me. I’d been called a hypochondriac all my life. I’d had teammates and classmates and doctors and even family members insist that it was “all in my head” and that I was “doing it just for attention.” Hell, I’ve even had a reader tell me one of my characters was “a bitch for bitching about her period all the time.”

(Fact: endometriosis and fibroids flare most often during menstrual cycles, FYI. And the pain has been called “comparable to labor pains.” So yeah. People with endo and fibroids are going to “bitch” about that.)

During my darkest moments — which often come out of nowhere — I just collapse on my bed and ugly cry. I can still survive quite well most days, but sometimes survival isn’t enough. Sometimes I just scream to an empty room about how unfair it is that I’m in pain all the time and can’t trust my own damn mind because it’s effing broken and I’m the most pathetic creature in the whole damn ‘verse because everything I have is incurable and I’ll never be able to do basic things like have sex without pain or eat food without getting sick or sleep without waking up and thinking I just killed someone or cheated on someone and AAAAAAAAAAAGGGGGGGGGGH!

“Look, I’m sure you don’t mean anything by it, but I’ve had enough of being studied by shrinks. And people in general. Seriously, people think mentally ill people are so interesting until they get hurt by one.”

Oliver’s shrink voice returns as he picks up a notebook. “Would you care to elaborate on that, Mari?”

Heat rises in my face, and I narrow my eyes at him. “Yeah, I would. And I’ll make it simple for you. You have no idea what it’s like to be me.” I gesture vehemently down to the useless wreck of illness-ridden body I’m stuck with. “How do you think I feel being trapped like this, unable to trust my body or my brain? I used to actually do things. I used to be a star employee, a student athlete, a freaking valedictorian!”

I shouldn’t care this much. Those things weren’t really me. They were never me. But I don’t know what’s me or not me anymore.

Tears well up in the corners of my eyes, but I stubbornly squash them. I shouldn’t cry over this. I’ll never let Oliver see me cry.

I take a deep, shuddering breath and go on the attack again. “So now I hide in bed all day because half the damn world gives me a panic attack, and the other half thinks I’m repulsive. People hear ‘bipolar’, and suddenly, I’m a stranger. I’m no different than a wild-eyed homeless guy living in the subway. I’m just as scary.” My voice comes out choked, but hard. “And you know what? They’re probably right. I’m a walking freak show. How could you know anything about that?”

“Mari, I understand you’re frustrated, but—”

I don’t want his pity any more than I wanted Jason’s. I’m not that pathetic. “And you know what’s even worse than being someone like me?” I cut him off as my voice rises. “Living with someone who’s worse than me. You have no idea how it breaks you a little at time when someone who you care about rips you to shreds every time they lose it.”

(I know. Dramatic, right? I let one of my characters describe how that freakout feels above — believe me when I say it all feels very overwhelming and scary and effed up as hell in the moment. I was going to put a “freaking out” gif right here, but I can’t make that funny. I just can’t.)

But then there are the other days, days where I actually consider myself lucky. Many girls in my endometriosis support group don’t have good days at all — they have to be on oxy and other prescription painkillers 24/7 just to cope. Some people with severe mental illnesses are completely consumed by destructive impulses and can’t take care of themselves. Others, like my late grandmother, spiral deeper and deeper until they believe suicide is their only way out.

Have I been suicidal before? Yes.

But I’m still here, and I’m not going anywhere.

4. It’s not who I am

I’m not “the bipolar chick” or “the chronically ill character”. When I think about myself, words like “dancer” and “teacher” and “chef” and “writer” come to mind. Do my illnesses shape my world? Undeniably. But do they define me and how I fit into that world? Hell. NO.

There’s no magic pill or treatment that will cure my conditions; I’ll likely have them for the rest of my life. But I sure as hell won’t let them rule that life.

So . . . yeah. That’s a basic rundown of the most common aspects of living with an invisible illness. Obviously, it’s not even close to exhaustive, but I’d love to do a series that goes into depth on the details of specific illnesses. Maybe I’ll just do it so I can get it all out there. Talking about this is really therapeutic.

Stay fiery, peeps. Try to look beneath the surface.

(And if you want to read more, hit up Marieke Nijkamp and Ava Jae. They have some good posts about this shiz.)