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.

Restaurant Eating for the Dietarily Restricted

I hate the word foodie, because it brings to mind a really wealthy brunch addict who instagrams pictures of their kale salads and smells their wine before they drink it.

So I’ll just say that I love food.

And more than loving food itself, I love going out to eat. The whole process has always been fun for me–– choosing a great restaurant, eating awesome food with the right company. And living in a city like Chicago, I could pretty much try a new restaurant every weekend and still never make a dent in all there is to be eaten here.

I'm not immune to the brunch Instagram. I'm human.

So imagine my struggle with new dietary restrictions.

“Dietary restrictions” is a kind term for my current eating situation. To me, dietary restrictions means something simple that you could write on the RSVP card to a wedding: “I’m a vegetarian,” “I can’t eat gluten,” “I’m dairy free,” “I will be dining at the open bar.”

But with Crohn’s (and colitis, and a lot of other illnesses), dietary restrictions are a bit more complicated. Suffice it to say I can eat what my gut decides it can tolerate–– and it’s being pretty picky and changing its mind more than a college freshman deciding on a major. Lately it’s been mainly fish, bread, and potatoes that have been going over okay–– what I like to sacrilegiously call my Jesus diet.

So how do you explain that to friends? Or a restaurant? Or a well-meaning aunt who just wants to cook you dinner? This is where eating out of your own home gets tricky and, often, un-fun. You can’t exactly sit there and go over the entire ingredient list with your server, lest they think you’re on some sort of Gwyneth Paltrow-inspired fad diet and spit in your food for being an immense pain in their ass on a busy night.

Last weekend I went out for a girls night with some friends from college. For everyone else, the prospect of picking a restaurant was probably just a normal group text. But for me, I sat on Yelp for a good hour, trying to come up with bars to suggest that were fun, cheap, and had stuff I could eat. I found a place! And ended up being able to order with minimal special instructions and just enjoy my night (and my tuna) with friends. Planning ahead, while not always the most fun! and spontaneous! thing to do can really help you relax and have a good time while you’re there–– no one wants to spend dinner stressing about whether the thing you just ate is going to make you need to pop a painkiller.

I may even be a repeat offender!

I also make pretty much all of my meals (down to breakfast and snacks, too) ahead of time to make life easier. That way, if I’m headed to an event where I don’t know the menu, I can eat my meal-prepped dinner beforehand or stuff some safe snacks in my purse. I have a reputation for getting hangry, so ending up somewhere with no Crohn’s friendly options is not an option for me (and is not advised for the people around me–– sorry for being mean when I’m hungry, friends!)

Having to plan your food ahead doesn’t have to be all bad, either–– it can make you look like an awesome party guest! I went to a barbecue recently and BYO-salmon for the grill, plus I brought a potato salad. It was great because the potato salad guaranteed there was something there I could eat (see ya, hanger) and it’s also just thoughtful to bring a dish to share when invited to a party. So take that, Crohn’s–– while I may be losing my spontaneous ability to go grab late night poutine after some aggressive dancing to Britney Spears, I am gaining in adulting points. And Barefoot Contessa recipes–– holler at that tarragon potato salad, folks.

Make 'Em Laugh

Comedy has always been an integral part of my life. From the early days of staying up late to watch "Saturday Night Live" with my dad to high school nights spent doing weird bits with my best friends, I’ve always leaned toward the more sarcastic side of life.

Sometimes jokes are just for fun, but they’ve also always been a great coping mechanism for me. Some people might call it a crutch, but those people are just well-adjusted assholes who can’t be trusted. Whether it was a fight with a friend or my parent’s divorce, joking about it has always made the bad stuff feel a little bit more manageable. If you can take something that hurts you and use it to make other people laugh, you’re turning it into something kind of beautiful.

When it comes to chronic illness, arming myself with a good sense of humor has been the greatest tool in my arsenal. Don’t get me wrong–– I have bad days where I just want to sit and wallow about how shitty things might be at that particular moment, no jokes allowed. And conversely, there are people who deal with their illness with unending positivity about silver linings and how things could be worse. But on most days, I opt for a different approach: making a joke out of the seriousness. And with Crohn’s, it’s easy to do–– doctors have literally stuck a camera up my butt on multiple occasions. If that doesn’t lend itself to comedy, I don’t know what does.

Saying something gross to strangers

Disclaimer: this approach probably isn’t for everyone. Sometimes, joking about a serious illness can offend, which is totally fair. But there’s a really great quote from the movie “Garden State” said by Natalie Portman’s character, who suffers from epilepsy, and it’s always stuck with me:

“What do you do? You laugh. I’m not saying I don’t cry but in between I laugh and I realize how silly it is to take anything too seriously.”

I’ve always tried to take this same approach. Let yourself feel your feelings–– if what you need that day is a good cry, do it. It feels great sometimes. But if you feel the need to make light of something heavy, lean in to that feeling. It can be really cathartic.

I have been blessed with a group of wonderful weirdos that I have called my best friends since about the age of ten. Nothing is really off limits for us to joke about, which has made my Crohn’s experience so much lighter and easier to handle. I don’t have to worry about burdening them, or grossing them out, because they’re the first ones to crack a joke about my messed up colon. During this most recent flare, one of my best friends sent me toilet paper with Donald Trump’s face on it. Best “get well soon” gift ever.

My best friends. They are impossible to out-gross.

Being able to joke around with the people you love makes talking about your symptoms a lot less alienating. That’s why it’s important to set the tone with the people in your life. It’s hard to know what to say when someone tells you about their medical problems. Do you say you’re sorry? Do you say it’ll get better? Do you ask questions, or respect their privacy? It honestly all depends on the person, so it’s up to us (the sick persons involved) to lead the way. I like answering questions about my disease because it raises awareness, and I like joking about it because it helps me and others cope. So I always try to set that tone early, so people know it’s okay to ask, and that it’s okay to joke.

So when you see me making light of something like hand tremors or painsomnia, I promise I’m not just being a terrible human being, or feeling sorry for myself. I’m trying to come to terms with some no-fun stuff by making it fun in any way I can. I’m not looking for pity, or a reassuring platitude about how it gets better. I’m just looking for some understanding, and maybe some more friends who can get down with a poop joke.

Living My (Grandma's) Best Life

I have officially become my grandmother.

I know all girls worry about becoming their mothers, which is fair, but to be honest my mom gets more shit done in a day than an entire olympic curling team, so becoming her would not be that bad. I would make a really great omelet.

But I have surpassed my mother and skipped straight to my Gramma. My Gramma, may she rest in peace, was a lovely woman at her best and a wildly stubborn one at her worse. She was tenacious as hell and in my memories, always incredibly tough. She was also always ill.

From the time she was a toddler, my grandmother suffered from a wide array of disabilities–– so wide, in fact, we’re not even quite sure we know what all was included in her diagnosis. She grew up sick, and it only worsened as she got older. I have plenty of great memories of time spent with my Gramma, but in none of them is she healthy.

And in only the way a child can, my memories were also supremely about how all of this affected ME. I often dreaded calling my Gramma up to say hi because the conversations were never pleasant–– they were always about how bad she was feeling. Seven-year-old me just wanted to shake her and say “Let’s talk about something happier! You’ll feel better if we talk about more positive things!”

Well, in an interesting karmic twist, I have officially become my grandmother–– the perpetually sick person in the room. And it’s turned out to be good thing, because it’s allowed me to understand her better. It’s also allowed me to better understand why some of my loved ones don’t seem to “get it,” and why they drive so hard toward positivity on days I just need a listening ear for my litany of complaints (because, as we have discussed, I am a narcissistic beast).

Because when you’re sick, like my Gramma was or like I am or like anyone with chronic illness(es) is, it can consume you. When I’m not actively in a Crohn’s flare, I can go weeks without mentioning my condition, or thinking about it, or wanting to talk about it. During those times, it’s easy to be positive and post Instagram platitudes about keeping your head up.

But when you’re in a bout of being really sick, to the point where it’s hard to walk, or eat, or sleep like a normally functioning human, it takes up a lot of real estate in not just your body, but in your brain. You spend a lot of time alone, watching tv or reading a book because you’re too tired to go out. You have a lot of anxiety about doing anything that might make you feel worse–– including things as simple as lunch with a friend. And with all of your time and energy going into feeling the bare minimum levels of functional, it’s hard to think about anything else. You don’t have a fun story about what happened at the bar last week to contribute at friend story time–– you just have a fun story about how your new steroid is giving you insomnia, and late night tv is literally OVERFLOWING WITH FULL HOUSE RERUNS.

So when someone asks how you are, you know you should say “good,” and move on. Or better yet, bring up the latest craziness Donald Trump said or who you think got robbed at the Oscars. Almost anything is easier to say than “I’m in a lot of pain,” but for some reason, it’s all you want to say. Because not saying it makes you feel isolated.

I’m not sure what exactly I want people to say when I tell them about my experience or my symptoms. The most common response is something along the lines of “feel better soon,” and while I appreciate the sentiment, I would much rather just have someone acknowledge that it sucks. And that it’s not a cold–– I won’t get better soon, and the best way you can help me in the interim is by listening, and maybe by sending over some movie recommendations. I’m running out of rom coms.

Positivity is great, and has its place in coping. It’s a big, shiny place, where I get sick of feeling bad for myself and learn to love eating mostly pudding for months at a time. But before that place often comes feeling really shitty. So if you’re friends with someone with a chronic illness, I get it–– I get the desire to push them towards the shiny, positive pudding place. It’s easier. But it’s possible the best thing you can give them is an empathetic ear to rant to. And maybe some mashed potatoes.