I'm The Sick Girl, But I'm Everything Else, Too.

“You are not your disease.”

That’s something people like to say when you’re sick. And it’s true! It’s so true. You are not your disease. A diagnosis does not define your character. But sometimes when people say “you are not your disease,” what they really mean is “please stop talking about your disease as it is making me uncomfortable and I would like to talk about more pleasant matters, like what happened last night on The Bachelorette.”

I am not my disease. I know this. But my disease does inform a lot of the things I do and feel, because duh. When you’re in pain or discomfort on a daily basis, it’s going to inform parts of you. When you can’t socialize with your friends because you’re having a terrible fatigue day, it’s going to affect you. Accepting that goes a long way toward stabilizing your mental health. But that’s all the disease is–– a part of me. It defines me in the way that all of the other parts define me, both good and bad.

And in a flare like the present one, I do sometimes worry that my life revolves around my illness. My planner is full of doctor’s appointments, infusions, and support groups. My social media posts look like the diary of a grandma who really likes to Instagram. I don’t have exciting weekend plans to contribute at the water cooler–– just maybe a story about the movie I watched this weekend (which was Beauty & The Beast, if you were wondering. It really holds up).

I am a girl who makes my friends dress up like Taylor Swift

So today I got to thinking–– does your life center too much around your illness? What’s your identity these days aside from sick girl? And here’s what I came up with. These are all (or some) of the things, aside from a Crohn’s Disease diagnosis, that make me “me.”

I am a writer. This is central to my character and humanity. Even when I can’t get my shit together long enough to be working on a legitimate project with any sort of discipline, I am always writing bits and pieces and notes and letters and blogs and first acts of plays I will never finish.

I am a cat mom. I have embraced cat-lady-dom in full force with my little Russian Blue Alfie and my roommate’s cat, Tiny. They make my days so much more adorable and sunshiney and even writing this makes me want to devolve into a pile of baby-talking, cat-toy-buying mush.

I am a compulsive reader. More detrimentally to my paycheck, I am a compulsive book-buyer. Everything from classics to modern lit to young adult fiction to beach reads to memoirs–– I will read it. Book stores and libraries house some of my favorite memories and generally make me feel safe.

I am a Taylor Swift super fan. I know every word of every song by heart. Last summer I spent way too much of my disposable income to see her two nights in a row in Chicago. I grew up with her songs, and they will always hold a special place in my heart. I once had a Taylor Swift themed birthday party in which everyone was forcefully encouraged to dress up like her. She liked a picture of my birthday cake on Tumblr and I cried.

I am a girl who drives to Iowa on a cold Saturday to canvass for the caucus

I am a political junkie. I am a lifelong democrat who watches CNN for fun. I have a favorite political analyst (her name is Donna and she loves a sassy jacket.) #ImWithHer, and I’ve got the t-shirt and the button to prove it.

I’m a comedian, in whatever way you would like to take that. I have dabbled in every form of making people laugh from stand up to web series to sketch writing and beyond. Making other people happy makes me happy, and making them laugh is the best way I know how to do that. (There is also, undeniably, a power aspect, as I am probably a tiny dictator of fun.)

I am a volunteer. I like to give time and effort to a cause. As a kid, this took the form of community service clubs and volunteer hours and the like. Now I like to support the causes of others, speak up about issues that mean something to me, and raise money for cool organizations I feel strongly about (like CCFA.)

I am a friend. I will give you advice when you think you want to dump your boyfriend. I will make you a sad songs mixtape when you do. I will mail you a happy gift when you’re stressed, or when you’ve accomplished something awesome. I will support your startups, your side hustles, your stories and your art. I will cheer you on forever. And even when I’m too sick to make it to your party, I will send you unending snapchats of the aforementioned cat children (jury is still out on if this makes me a good friend or an annoying one, but hey.)

So that’s me. Sick girl, funny girl, obsessed-with-pop music and shirts with cats on them girl. If you’re chronically ill, I highly recommend this little activity of writing down who you are outside of your illness. Sometimes we all need a reminder that we don’t have to be just one thing, and we don’t have to fit into neat little boxes. I have a lot of messy, disorganized boxes, and those are pretty great as well.

"It's The Little Things" And Other True Cliches

I have always been a weirdly ambitious person.

As a child of six, I used to tell my parents that I was going to be so successful one day that they’d need to name a new unit of money after me. Six year old me was a tiny capitalist dictator.  While normal little girls wanted to be Cinderella or a doctor or something, I wanted to be Oprah Winfrey. I wanted my own television show, my own magazine, my own empire. I used to set an alarm on summer mornings so I could be up to watch Oprah every day, taking diligent mental notes on how to become the most powerful woman in the world.

So I’m kind of a total Slytherin.

As I grew up, the dreams obviously changed, but were still always pretty grandiose. At age 24, my biggest life goal would be to write and produce my own sitcom. So you know, just your average Midwestern girl’s normal dreams.

Things Oprah and I have in common: loving bread.

I’ve been slowly but surely working toward those dreams for a long time now. I worked my ass off in school, took every writing-adjacent opportunity I could, and volunteered on live productions on the regular. I graduated college and got a job where I get paid actual money to write. I may not be Shonda Rhimes or Mindy Kaling yet, but the plan is moving along, okay?

But what happens to an aggressively ambitious person with big old dreams when that brain happens to be trapped in an arguably broken body?

When you have a chronic illness, it can really knock you on your ass without notice. It’s not something you can feasibly plan for. So when you’re trying to make plans for your life, it’s hard to do. You want to take a sick internship in New York that would open doors for your future or go travel across Asia for the experience of it, but you also know there’s a chance your disease could flare up out of the blue and ruin your well-laid plans.

My solution? Stop planning.

It’s an imperfect solution, I know. It would probably help me take over the world a la Oprah one day if I could do a bit more strategic career planning. But I deal with the hand I’ve been dealt, which sometimes means prioritizing getting through the day over getting through the next ten years and becoming a badass network mogul.

But you know what? Letting go of the plan has done wonders in making me a calmer, happier person. It may sound cheesy, but I’m learning every day how to value the little things over the big things. I know now that I don’t need millions of dollars or heaps of international praise to be happy or feel successful. What I actually need is good friends, a new book, and a colorful mug of some variety of fruity tea. And most days, that’s enough.

So while the cunning Slytherin in me cringes at the idea of “just enjoying the little things!” I’m learning that success can be defined in different ways based on your circumstances. Taking care of my mind and body can be a huge success if I let myself consider it one. Taking over the world one hit television show at a time? Definitely also success, but maybe a type of success I’m okay with working my way to more slowly.

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.