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How Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least.

See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an immunodeficiency? Migraines? Anxiety?

No. You can’t. Let’s be honest–you can’t even tell which of us is older (me people! Me. The one with bad vision. Everyone always thinks she is older). That’s what an invisible illness is–a condition that can’t be identified by just looking; it’s the pain that no one sees, the panic that no one notices, the everyday struggle that goes unrecognized, the illness that goes unseen, unrealized, sometimes unbelieved–that is what is meant by “invisible.”

Really almost all chronic illnesses fall under this category because so little of what goes on with our bodies is visible to the naked eye. And yes, this is good because I think most people, sick or not, prefer not to stick out. But it’s also bad. Why?

Well let’s go back to me as an example. Except for my inability to smile normally for pictures, I look like a pretty average college student (I think so at least). So people who don’t know me, who say, see me in a morning class but not in an afternoon one, would assume I’m just skipping that second class. And that, in turn, would change the way they look at me. I know this from high school; most kids I had classes with the last couple years of high school thought I just skipped class all the time. So did some of the teachers. Because they couldn’t see what was wrong with me, and because at the time, I didn’t even know exactly what was wrong with me, they didn’t believe that a teenager could really be sick that much. Therefore I must just be a lazy, liar skipping class and then making up tales to cover my butt.

We humans have a hard time believing in what we cannot see. It’s silly, but it is definitely a thing. When applied to invisible illness, it causes people to say stuff like “but you don’t look sick,” in turn causing an increased co-morbidity of chronic illness and homicidal impulses (kidding). But hearing stuff like “but you don’t look sick” or “but you’re too young to have all these problems” does get old real fast. Not that I would like people to come up to me and say, “wow you look awful!” That’s not what I’m getting at here. What I’m getting at is that all people with invisible illnesses want is for you to believe them. Believe when they say they’re in pain, they’re in pain–even if you can’t see it. Believe when they say they’re tired, it’s more than just being a little sleepy. Believe them when they say they’d love to, but they’re not feeling up to it. Just believe and be understanding. Those two actions alone can significantly lift the burden of an invisible illness.

My Brain’s Got a People Allergy

At the end of winter break this year my dad approached me in his classic-dad manner, “Miranda.” He said. “I’ve got an assignment for you this semester.”

I couldn’t tell yet if he was joking or not (he is about 90% of the time).

“Your assignment is to make a friend a week and report back to me.”

Yeah, no, I still couldn’t tell. He had to be joking though, right?

Every week this past semester when we’d Skype the parents my dad would walk onto screen, “Miranda! Micaela! Friend report.”

Well if it wasn’t a joke to him, it sure was to us. The idea that either of us, but especially I, could make a friend every week–it’s just hilariously absurd. After all, a Myers-Briggs personality test once told me I’m 98% introverted. It also said that no one is 100% introverted, so literally only 1% of the population is more introverted than I am. But that’s only part of it.

Another reason I’m no social butterfly, nor even a social caterpillar, is my anxiety disorder. Ugh I hate saying it. I hate the word anxiety. I hate admitting to that heart racing, gut-clenching parasite. I hate giving it a name. I hate it.

Anxiety feels like something I should be able to control, so I’m embarrassed that I can’t. In my head I know that I should be no more ashamed to have anxiety than to have PI or migraines or an incredibly lazy stomach. In my head I know that my body’s overreaction to normal life things, especially social situations, is as real and uncontrollable as its anaphylactic reaction when I accidentally eat certain types of nuts. But also in my head is a lifetime of exposure to the stigma of mental illness. Also in my head I see the character on tv sweating and popping Xanax like they’re Tic Tacs; I see the person in the movie who is too afraid to leave their house; I see the cartoon character who always carries around a paper bag to hyperventilate in. Isn’t it funny? they seem to say to me. Aren’t people like this silly? After all it’s all in their head.

That’s why when I meet with my professors at the beginning of the semester I go over my immunodeficiency, sometimes my migraines and stomach problems–I never say a word about my anxiety. Though it’s the very thing making my heart pound while sitting and having a simple conversation, I hide it away. I don’t say anything about it when I meet with them. I don’t say anything when I have to give a presentation and I know I will get a lower grade because the ultimate trigger for my anxiety is public speaking. I don’t say anything when my professor emails me reminding me that there’s a participation grade.

But that stigma is also why I’m sharing this now, even though it hurts my pride considerably–even though part of me hopes that no one will read this. The other part of me hopes everyone will read this, because I may be embarrassed of my anxiety, but I shouldn’t be. No one should be. It sucks to have to be the one to write “anxious mess” across my forehead in doing so, but somebody’s got to say it.

So my brain’s got a bit of a people/life allergy. What’s there to be embarrassed about in that? 😉