I'm A Comeback Kid

It’s fair to say this past year has been one of the most hellacious of my life. 2016 seems to have sucked for everyone –– from losing some of Hollywood’s greatest legends to losing our goddamn minds at the polling place, this is the year that launched a thousand memes about the sheer garbage fire of it all.  

Behind probably only the year my parents got divorced, this year is number 2 worst ever. It could have it’s own trophy for shittiness. And it’s easy, when you’re having an unfortunate series of events, to not look on the bright side. When I’m doubled over in pain or trying to figure out how to pay exorbitant medical bills, people who talk about looking on bright sides make me want to punch them in the face. Hard.

But lately I’ve taken to being that person for myself, and as it were, it’s nearly physically impossible to punch yourself in the face. As I’m on a self-described “upswing” from my personal longest flare ever, it’s a little easier to find the bright sides. It’s easier to reflect now on the things the last year of garbage has brought me–– aside from painkillers and a geriatric bedtime.

This year has brought me new skills. I’ve gone from a girl who got dinner from her local taqueria several nights a week (and pizza rolls for the rest) to a girl who is currently multi-tasking–– writing while keeping an eye on my spinach tortellini soup. I taught myself how to cook. I joined a gym to fend off all the prednisone weight. I took up meditating to keep myself from going insane with all the time I spent in solitary, sick kid confinement. This year forced me to become an adult in ways I otherwise would have continued putting off for another decade.

This year brought back old loves. Not the literal, romantic kind because hey–– I spent most of this year chilling in pajamas and it hasn’t been super sexy. But as an English major and major book nerd, I spent the first 22 years of my life reading incessantly, before life and a full time job got in the way. Being sicker than usual brought me back to reading. I’ve read an impressive amount of books in the past year and have no intentions of slowing down anytime soon.

This year strengthened bonds. They say you find out who your friends are when times get tough, and that’s been abundantly true. I’ve solidified the fact that my “ride or dies” are actually down to be there for the dying in pain part. My best friends still want to be my best friends, even when I’m too sick to go out and be a very fun friend. I have rarely felt quite so loved as I have in the last 10 or so months.

This year taught me appreciation. I will never again view my body in the same way. I’m not saying I’m about to go train for a marathon anytime soon, but I’ve gained a new appreciation for the things I can do physically. My body is like the Little Engine That Could, working way harder than everyone else’s just to keep me functional. Since I now know what it’s like to have days (or months even) where walking up a flight of stairs is hard, I am now decidedly here to make the most of the good days–– which includes saying yes to things I never thought I would, like signing up for a ballet class, and climbing a rock wall, and planning my first trip alone abroad.

I like to think I’m still myself in all the essential, important ways. I’m just maybe a better, more grateful, better educated me. I’m never going to be one of those people running around talking about how I’m “grateful for my disease.” If I had 3 wishes with a genie right this second, wish number one would absofuckinglutely be that I wish I was healthy. But since genies seem to only exist in Disney movies, I’m accepting things and moving on, and trying to catch some bright sides along the way.

FOGO –– Fear Of Going Out

Everybody loves an acronym, and FOMO is one that even the most chill of humans knows well. A fear of missing out –– a fear of missing the coolest party of the year on the night you chose to stay in and watch the new Gilmore Girls. A fear of missing a chance at ~ true love ~ if you pass on a Tinder date with a guy who likes the same bands you do. A fear of missing a great sale, or a funny movie, or just a solid night out with friends that you’ll replay over and over on snapchat later if you don’t go.

Chronically ill people like myself experience FOMO all the time. Being sick (very) often hinders our ability to socialize like fully able people, and I for one can say I’m constantly wondering what funny story or lifelong memory I’m missing out on when my intestines force me in on my couch on a Friday night.

Dear Crohn's - please stop being such a drag on my previously stellar social life.

But I’ve noticed that chronic illness has also gifted me another horrible acronym –– FOGO. Fear of going out. Because as much as I want to go dance to Rihanna and drink a vodka soda and be there when someone pukes off a balcony, the FOMO is often outweighed by the FOGO. Fear of going out. Fear of thinking I feel well enough only to be slapped in the proverbial face with pain that I can’t bear out in public.

I always say that if I could have one superpower, it would be teleportation. My general reason is because I live in Chicago, and during Chicago winters nothing sounds more lovely than teleporting home and never touching my boots to snow. But a slightly more real reason is that on more occasions than I could possibly count, I’ve found myself in situations where I’m a lengthy Subway ride away from home and I’m doubled over in pain.

The panic that comes with being in pain in a public setting is immeasurable. That’s why it’s usually easier to stick to my couch, where if the pain comes, I can ride it out with the comfort of my own heating pad. But what happens if I’m out to dinner with friends of friends? What happens if I’m on a date? What happens if I decided to try a cool new bar that’s not at all close to my house, and now I’m clutching my stomach in the fetal position on a 25-minute uber ride home?

Crafting an "I Miss You" letter to vodka sodas.

These are all the things I think about when I’m weighing whether or not to go out –– the FOGO versus the FOMO. It’s a toss-up on any given day which side of me will win: the adventurous 20-something who just wants to drink and dance and say “fuck it,” or the responsible sick girl who knows that the pain can come at any time and in any circumstances, and Crohn’s disease doesn’t care that you’re on a really solid first date with a guy who doesn’t brag about his summer abroad in Spain.

So I’m not saying I always stay in –– far from it –– but that while my peers are asking themselves what they should wear or what time they need to leave the house to get to a party on time, people with chronic illnesses have a slightly different prep routine that involves making sure you have emergency pain meds on you, knowing the quickest route home if you need it, and keeping your fingers crossed for a night of normalcy.

Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

Friends With (Medical) Benefits

When you’re chronically ill, it’s easy to get caught up in your own stuff. When you spend most of your days in some level of pain and discomfort, it’s easy to think you’re the only one struggling. But lately I’ve been thinking more about how my struggles with Crohn’s affect the people around me, and the ways caring about a sick person can make you feel kind of helpless.

While having a chronic illness is definitely a huge daily challenge, I can also easily see the challenge that comes from seeing someone you love sick with no light at the end of the tunnel. That’s why I don’t get offended (or at least I try not to) when people ask if I’m better. While I’ve come to terms with the fact that I will never be “better” by traditional standards, I can’t necessarily expect my loved ones to come to that acceptance so quickly.

Luckily I’ve been surrounded by some exceptionally supportive people. My friends and family prove to me every day that even if not everybody “gets it,” I am at the very least blessed with people who care enough to try. I could easily write a novel about the many ways in which these people have helped me, and I hope I tell them enough how appreciative I am of them.

Kelsey (front and center) has been my best friend since I was 10, and she does  things like having her whole PA class wear purple for World IBD Day because she is a better friend than any human deserves.

So for anyone with a chronically ill person in their life, here’s the best advice I can give you on how to be a good friend to a sick person, as evidenced so flawlessly by my wonderful best friends.

Listen up. Honestly, the biggest thing you can do is provide a commiserating ear. One of the biggest issues I deal with in terms of my illness is guilt–– guilt that I’m bothering the people I love with my complaints about my symptoms. But when you’re going through a patch of bad health, new symptoms can seem like they’re popping up every day, and it gets incredibly lonely if you have no one to vent to. Luckily, I have a few friends who I know I can text no matter what with unsolicited complaints such as “My joint pain is making it hard to eat my cereal. Send help.”

Don’t Question Limitations. Listen–– people with chronic illnesses probably already feel guilty about the various accommodations they need. So if they tell you they can’t spend long amounts of time out in the heat, or that they need a certain amount of rest between activities, don’t question them or pressure them to push through.

Be a cheering up squad. People with chronic illnesses often suffer from depression, because having a chronic illness sucks. It isolates you and makes you feel like you aren’t in control of your own body or life. I’m very good at hiding my own bouts of sadness because I don’t want to burden anyone. That being said, it means the world when a friend sees through the facade and realizes I’m in need of some encouragement–– whether that means a care package from my mom or a nice note (I adore snail mail.) My best friend Sarah recently brought me back a stuffed Baymax from Disney World, and I was so freaking touched to have my own personal healthcare companion that I pretty much tear up every time I look at him.

Not only do I have my own Baymax friend, but I have evidence of his adventures at Disney!

Celebrate small victories. For the average person, going on a walk or staying up past 10 isn’t an accomplishment. But for a chronically ill person, these little things can be huge. I recently got the okay from my doctor to taper off my steroids, and my best friend Kelsey has texted me every. single. day. To wish me a happy taper day 5, or 7, or what have you. It means the world to know that someone cares enough to check in, and also that someone else gets how exciting this seemingly small step is for me.

If you’re grossed out, don’t show it. I have Crohn’s disease. Gross stuff happens. A good week for me during this flare involves not having internal bleeding. There are plenty of people in my life that I have to lie to in order to spare them from the unfortunate GI symptoms that are my daily life. You know who I don’t have to do that with? My best friends. If they ask me to hang out and I can’t because of some strategically gross Crohn’s symptoms, I now send them this video and no more questions are asked.

Show up. The amount of friends and family who came out to my CCFA walk was overwhelming and lovely. The amount of friends who have given up a Saturday night to watch movies with me on my couch until I fall asleep at 8 PM is heartwarming. I’m of the opinion that bar-hopping friends come and go, but the people who will hang out with you when you aren’t very fun are forever.

So if you’re the friend or family member of someone with a chronic illness, know that we love you. We love you when you get it, we love you when you don’t exactly get it, and we even love you when pain-induced insomnia makes us cranky jerks. So thanks for being extra kind in a world that needs it. And to my sister–– thanks for the cookies.

Chronically Single: Dating While Sick

I am terrible at dating.

I think to be good at dating there needs to be a modicum of giving a damn involved, and that is something I just do not have. I don’t want to pretend to be interested in some Tinder dude’s improv show. I just don’t have the time or energy.

I’ve always been bad at dating. The peak of my allure was in the eighth grade, where I think I had a total of two “boyfriends” with whom I slow danced to Ashanti in a gym. From then on, though, I could never bring myself to devote much time and energy to attracting a dude. I preferred to spend said time planning elaborate pranks with my friends or making puffy paint shirts with Dumbledore on them. Yes, I have always been this cool and hip.

So in all fairness, my lame dating history pre-dates my Crohn’s diagnosis, and there’s a solid chance that even if I were in full physical health, I would still be hanging out with a romantic comedy and a pizza on a Friday night. But as it stands I do have Crohn’s, and the being chronically ill thing? Definitely makes the dating thing a bit harder.

I know there are plenty of people out there with chronic illnesses who are in awesome, happy relationships. Maybe those people were better at dating to begin with, like Fonzi or Gigi Hadid, and now they’re found their unicorn person who takes them to doctor’s appointments and binge watches House of Cards with them on bad pain days. Maybe they’ve found someone else with a chronic illness, who really “gets it” and doesn’t get salty if they have to miss out on plans due to a flare. Maybe they’re dating a medical professional who has seen way too much to be grossed out or put off by their less cute symptoms. To those people I say: thank you for existing, and giving me hope I won’t be single forever. Please set me up with your doctor friends.

But as a chronically single 24 year old girl with a random disease, the “date” situation can get a little prickly. Especially in times like now, where I’m in a pretty aggressive flare. Not being able to ingest alcohol means I can’t go out for drinks, killing a key way of meeting and mingling with the opposite sex. I also can’t eat most foods, leading your average guy to think I’m maybe just on some fad juice cleanse. I also worry often about disappointing someone–– even if we go for coffee and they like me, will they quickly grow tired of the fact that during periods of bad health, I’m usually in bed by 8:30?

It’s hard, because you just want to scream “I swear I’m fun and normal!” But generally speaking, dudes don’t respond well to being screamed at by strangers? Like I said, dating is hard.

Among my many healthy single friends, an excuse I often hear for not going out on dates is “I’m just too busy” or “I don’t have the time.” While some people will call these excuses a cop out, they’re often legitimate. I’m friends with some badass women who are in grad school, running organizations, and working their way up the ladder in really cool companies. If they don’t have an hour to go for drinks with a CrossFit instructor who wears sandals, I will grant them that.

And so in a different way, I also find it hard to prioritize the little time and energy I have into blind internet dates. When your symptoms mean you only have about three hours of solid energy a day that’s not devoted to being at work, you tend to want to use it for more productive things like going to your doctor’s appointments, or cooking, or seeing a friend. And if that means it takes me a bit longer to find my made-for-me unicorn person, I’ll just have to wait.

So I suppose what I’m saying is, I probably won’t be finding true love anytime soon, unless that love is found in line at Whole Foods while I’m buying a salmon and some V8. Which would be a great meet-cute, so maybe get on that, universe?