You're So Vain, You Probably Think This Disease Is About You.

“Vanity is the quicksand of reason.”

I have officially been on steroids for over three months now. That’s long enough to be considered “long term.” That’s long enough to be fully enjoying all of Prednisone’s many and wonderful side effects.

The list of things steroids can do to your body is lengthy, and laughable in how awful they are. From severe mood swings to insomnia to acne to hand tremors, I’ve experienced the whole gang at this point. My joints have become arthritic. I pee like, 74 times a day.

Why on earth would anyone take these devil pills? You might ask. And that’s a great question! It’s one I field a lot! Because it does seem that if a steroid is causing so many problems, wouldn’t you just stop taking it? But the problem is, people on steroids are on them because whatever disease it is they have has become so bad that things like three hours of sleep a night or a perpetual tremor don’t seem all that bad anymore. For me in my current flare, not being on the steroids would mean bleeding in my intestines and being in so much pain I wouldn’t be able to go to work. When not being able to live your life is the alternative, you deal with a mood swing or ten.

So all in all, it’s a catch 22 of a shitty situation (all the puns intended.) And yet, with all of these serious medical issues swirling around me, there’s one I keep getting caught up on: moon face.

Moon face is a cutesy way of referring to the fact that Prednisone can make your face swell and get super round. I’ve always had a lot of baby fat in my face–– even in my best shape during my super active teenage years, I still had the face of a Cabbage Patch Kid. It’s something that I’ve always been self-conscious about, even while I preached to others about self love and body acceptance.

So when the Prednisone, over time, started to grow my large face even bigger like some kind of sad version of the blueberry girl from Willy Wonka, I tried not to let it bother me. I tried to tell myself that I’m an adult, and I’m too old for silly vanity and self-consciousness about how I look. But you know what? Apparently I’m not that enlightened.

When you think your face can't get any wider, the universe surprises you~

I don’t think we ever really “grow out of” caring how we look, no matter how zen we try to be. I know in my heart that the roundness of my face is really not what matters in my life right now–– especially when I need to be focused on my physical and mental health–– but some days it’s okay to give in to the less mature parts of our nature and just admit we feel insecure sometimes. I know my ability to eat and go to work and live life is more important than how I look in my friends’ Instagram photos, but it doesn’t make my feelings about how I look less valid. For better or worse we live in a society that places so much of a premium on physical beauty, so when your body is already malfunctioning, it’s hard to also feel like you don’t have control of what others see.

So maybe one day I’ll come to you, totally not caring about looking like a female Humpty Dumpty. But if I always care a little, that’s okay, too. In the meantime, I’m going to go watch a YouTube tutorial about how to contour my face into oblivion.

Home Is Where The Heating Pad Is

Crohn’s disease, like any illness, isn’t just one thing.

Sometimes when commercials explain it, it just gets broken down to “something that fucks with your stomach.” While it absolutely does that, there’s a lot more to it. And among the super fun myriad of other symptoms, the one I want to talk about today is anxiety.

A lot of people tend to want to separate the physical and the mental when it comes to illness, but I tend to disagree. Diseases like Crohn’s or Colitis or any number of health issues are pretty much tailor-made to make you anxious. Think of it this way–– you need food to live. And on a less dramatic level, going out to eat with friends and family or attending dinners at other people’s homes is a pretty standard part of life. So if you have an illness that makes your eating situation more complicated, it’s easy for anxiety to accompany simple things like grabbing dinner with a friend or attending Easter brunch.

An over-priced candle ups the mood, ya know?

Additional anxieties can stem from less-than-fun GI symptoms as well. As someone with Crohn’s, I can’t exactly go on a random adventure hike with no destination–– always need to know where the nearest bathroom is. It’s not very glamorous, but it’s necessary.

The last major area in which chronic illness gives me anxiety is in other people’s perception of me and my disease. I never want anyone to think I’m being overly dramatic, or a hypochondriac, so I’m often hyper-accommodating even when it’s not best for my symptoms. If a friend wants to hang out and I’m too sick to, I may shuffle through and make it happen so I don’t feel guilty. Conversely, I may lie and come up with what I think is a more palatable excuse than “I’m too sick to go out today.”

All of this is to say that with a chronic illness, it’s easy to become a big ball of anxiety thanks to the littlest of everyday things. But then what do you do? Live your life like a bad Woody Allen movie? I’ll personally pass on that, as I’m not into dating my relatives. What I have found supremely helpful is finding and cultivating “safe spaces.”

Safe spaces can mean different things for different people. I am luckier than most because my workplace is one of my safe spaces. Part of that was inherent when I was hired–– I work for a very small internet company that has a pretty familial feel. I can wear leggings to work (great on bad pain days), and because of what I do for a living (web content), if I’m particularly ill I have the luxury of working from home. Also, because my office is small, I’m not just a number on a list of employees. My bosses and co-workers know about my medical problems and have always been wildly understanding.

I know I’m very lucky in this respect–– not everyone with a chronic illness has a workplace they’d deem “safe.” For economic reasons people have to take the jobs they can get, sometimes forcing them to work on their feet all day, making symptoms worse. In those cases, hopefully other safe spaces can be created to balance things out. Like the home!

I just moved into a new apartment, and I have quickly gone to work making it a safe, happy space for my Crohn’s. My room is a great safe haven after long days, with fluffy blankets and candles and a heating pad and Netflix and no fewer than two cats. My kitchen is also a safe place, because it’s where I make all the foods I know won’t hurt my body and exacerbate my symptoms. I’m nerdily obsessed with my new ninja blender. If work or school can’t be a safe haven for you, home is always a good place to create your own little bubble of happy. In the literal bubble sense, too–– go buy some bath bombs and relax your ass off.

Gettin' that college degree, y'all

If you’re still in school, I highly recommend being open with administrators and professors about your illness if you feel comfortable doing so. My university had an attendance policy that would have been nearly impossible to meet thanks to my Crohn’s, but after reaching out to our school’s disability services office, I was able to get special allowances from my professors to do work from home when necessary and even have separately proctored exams in case I couldn’t sit through one for a full hour. As a result, I went from struggling to graduating with a 4.0.

The moral of the story here is: anxiety blows, but it can blow considerably less if you’re open about your conditions and take the appropriate steps. Do what you can to make yourself feel happy and healthy in the places you spend the most time, and don’t be afraid to ask for help when you need it. People will surprise you with how wonderful and understanding they can be.

On Lena Dunham, Endometriosis, and Feeling Represented.

I had just turned 18 when I was diagnosed with Crohn’s disease. Eighteen is a weird age to be alive on the earth at all, but a particularly weird age to be told you now have a disease that is never going away. The first thing I did when I was diagnosed was inhale five and a half White Castles and a milkshake. Anyone who has ever had to do the prep for a colonoscopy knows–– you are damn hungry afterward. The second thing I did after I was diagnosed was google “celebrities with Crohn’s disease.”

“What a weird thing to do!” You’re probably thinking. But I am a good, practicing millennial, and nothing makes me feel more connected to the world around me than knowing someone with a lot of money and Twitter followers also knows my strife. Sadly, my search yielded very little. Kim Kardashian and Katy Perry are not secretly harboring intense digestive issues (at least not according to internet listicles–– the main authority of life).

So for years, I have had little insight into how a highly successful person and a Crohn’s-disease having person might live within the same body. I didn’t know any people in real life with Crohn’s–– just an occasional anecdote from a friend about how their cousin’s soccer coach has colitis, or something. But then Lena Dunham started getting real about endometriosis in a public setting.

Endometriosis and Crohn’s are totally different things, but they’re also similar in a lot of ways. Sufferers of both experience a lot of pain, have to spend a lot of time hanging out at the doctor trying to figure their insides out, etc. When in a particularly bad flare of endometriosis, it can be difficult for women to go about their daily lives.

So when Lena Dunham (whose work I admire immensely in general) posted on Instagram saying she’d be taking some time off from press for her show “Girls” to deal with her worsening endometriosis symptoms, something inside me felt understood. Here was this powerful young woman, who at an insanely young age has written a book, produced and starred in her own show, and started an awesome feminist newsletter–– and even she is not immune to the pull of her body’s illness. Even she has to know when to say “enough is enough” and just rest.

She also used the aforementioned newsletter to post a really eloquent piece on what it means to be young and chronically ill. I had always loved her for her emotional honesty as a writer, and I know many women identify with her stories of being young and figuring things out–– the “Girls” phenomenon. But to read a story of being young and figuring illness out, to me, felt revolutionary.

So while it may sound silly to need to hear “Celebrities! They’re just like us!” It honestly has helped me cope with my own limitations to see Lena speak so openly about hers. It’s a kind and necessary reminder that being sick doesn’t have to mean I can’t do the things I want to do–– and more so, that even the most successful and seemingly together among us are dealing with things behind the scenes, and taking care of yourself often has to come before everything else. People love that phrase “You have as many hours in a day as Beyonce,” but I kind of think that’s bullshit. We need more successful people out there who don’t keep up the front of always having it perfectly together. So thanks, Lena, for going public with your illness. Thanks for pulling back the Wizard of Oz style curtain and reminding sick girls with their laptops like myself that it’s okay if we don’t accomplish as much in a day as Beyonce–– as long as we take care of ourselves.

Why Is It Taboo To Talk About Illness?

There’s an old adage that tells us there are certain things we don’t talk about in polite conversation: religion and politics.

I’ve never been great at polite conversation.

There’s also a quote from the (best show of all time) Buffy The Vampire Slayer that eloquently states: “Tact is just not saying true stuff. I’ll pass.” Because I am an adult with a job, I understand that tact is often necessary in various situations, like in a professional meeting, or at the DMV. But in conversations with friends and family (or the ENTIRE INTERNET, hi guys), I like to think we can all let loose a little and say the true stuff.

And in addition to the squirmy topics of religion and politics, I would like to pose one more: illness.

Illness is not a comfortable thing to discuss because, like politics and religion, it’s personal. Talking about your experiences opens you up to judgment, which is a terrifying and vulnerable thing. I started this blog because writing is my personal catharsis, but sharing such specific details of my life does come with a certain amount of self-consciousness. Will this change how people see me? Will this affect opportunities in my life because I am now publicly putting myself out there as “the sick girl?” Will people quietly judge, and think I’m doing this for attention?

These are all great reasons not to talk about your illness, and just hole up with Netflix and your doctor’s phone number and try to deal with it solo. But the thing is, I’ve tried that. I’ve tried pretending the sickness isn’t there, and that I can do all the same things a perfectly healthy person can do. I’ve tried not talking about it so I don’t make anyone feel awkward or uncomfortable. And you know what? It felt super lonely. You can’t live your life in a bubble of cats and books and denial. (Just kidding–– that sounds great? Maybe just remove the denial part and talk to some friends about how you’re feeling. Keep the cats and books.)

But since I recently started talking publicly and openly about my illness, I have come across a million and one better reasons that you absolutely should talk about it. I’ve gotten supportive messages from friends and family. I’ve had old acquaintances and friends of friends reach out with stories of their own chronic illness struggles. I’ve gotten powerful advice and kind words and all kinds of encouragement. I’ve gotten, to appropriate a book title, the opposite of loneliness.

In sharing my experience, I am simply trying to normalize it. In sharing a photo of me getting a biologic infusion, or me in a hospital gown prepping for a procedure, I am not seeking attention or pity. The truth is, there are millions of people out there who spend a lot of their free time at the doctor, or the hospital, or the Walgreens picking up their latest prescription. And if we don’t recognize those stories, and talk about them, they become even more weird and taboo. So I’ll take one for the team and tell my stories–– plus, I find hospital gowns to be really slimming.

And it’s nice to know there are others out there sharing those stories too, and educating their friends and family on their day-to-day experiences of being ill. On a day when my symptoms don’t allow me to do what I like to call “normal people stuff,” the stories of others going through something similar comfort me. Not because they’re struggling–– in an ideal world, we would all be as healthy as that lady who lived to be 110 drinking only Dr. Pepper–– but because they’re getting through. Like me, they’ve got some stuff holding them back, but they’re getting through in spite of it all. And when you’re up with insomnia watching CNN at 3 AM, it’s kind of cool to know there’s a network of other people out there, whisper-yelling at the pundits with you.

The Dangerous World of Comparative Thinking

All of us have faced adversity in our lives. Whether it’s the death of someone close to us, a battle with a disease, bullying, or anything else, we all know what it’s like on some level to go through something difficult.

The thing is, we’re all special snowflakes here, so the problems we face are different. And even if they’re really similar, they’re still different because we as human beings experience emotion differently. The way you cope with the death of a family member may be entirely different than the way your best friend does.

And when people are facing hardships, it’s hard to know what to say. But here’s one thing I would actively advise not saying to someone going through a tough time:

“It could be worse.”

It could be worse is my biggest pet peeve when it comes to attempting to “comfort” someone. Of course it could be worse! A bomb could drop and kill all of us except the cockroaches! Paris Hilton could decide to start releasing music again! It could always be worse! You might as well say “the sky is blue” for all the new profound light you’re shedding on the situation.

Which is why I firmly believe “it could be worse” is a lazy thing to say–– you’re not empathizing, you’re just making the person feel guiltier for the emotions they’re experiencing. That person might now think “Yeah, it could be worse. So why do I still feel so shitty?” This just leads to a whirlwind of guilt over how we should feel versus how we actually feel. See? Not helpful.

I’m also guilty of thinking “it could be worse” in my own mind when I’m having a tough pain day or life just feels like a bit too much. You think it might make you feel better to put your problems in perspective–– like, at least my life is probably better than Jeb Bush’s? But comparing the hardships in your life to someone else’s doesn’t make your chronic joint pain go away. It doesn’t make your financial troubles disappear. It doesn’t bring anyone back from the dead.

So maybe next time you’re thinking of your own problems in comparison to others, do what Joey from Full House would want you to do and cut it out. Berating yourself for your emotions because someone else out there has it worse is not only silly and counterproductive, it’s potentially just bad for your own mental health. Life is not the Olympics of Suffering, and you don’t get a medal for having the worst problems of all, so maybe just let your problems exist as they are and don’t try to categorize or rank them.

And when it comes to chronic illness, it’s okay to be mad. It’s okay to feel like it’s not fair. It’s okay to feel like your bad day is bad, even if someone else’s bad day is worse. Sometimes the most cathartic thing we can do for ourselves is feeling what we feel, when we feel it, without piling on the guilt. And if you really need to think about someone having it worse than you to help you feel better, remember that men with really long ponytails exist. It usually helps.

"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.

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.

I Go To Therapy. Is That Supposed to be a Secret?

Un-fun fact: a lot of people who suffer from chronic illness also struggle with depression and anxiety.

The actual numbers on it vary so I’m not going to throw any highly scientific stats at you, but suffice it to say, physical and mental illness often go hand in hand. Some people are already predisposed to chemical imbalances in the brain like anxiety and depression. For others, the stress of being diagnosed with and coping with an incurable illness is the trigger.

I’m somewhere in the middle of those two types of people. This is not my first therapy rodeo. I’ve gone on and off since I was a kid and my parents got divorced. I went in college when I developed panic disorder. I’ve started back up again going now to deal with the day-to-day garbage that being sick does to my brain.

And by “does to my brain,” I’m not talking about the physical. Crohn’s disease doesn’t actively rot my cerebellum or anything, but it is a lot easier to go down a hole of dark thoughts when you’re faced with a lifetime of meds, doctor visits, and expensive copays. So what’s a professional sick patient to do?

Day-to-day relaxation methods include coloring and sassy mugs.

Talk to someone! For some, it’s enough to just talk with friends and family about how they’re feeling from time to time. For others, an actual, trained therapist can do more to help. Thanks to my latest flare I found myself repeatedly thinking: this is so unfair. Why can’t I go out and get drinks and real food with my friends? Why can’t I plan a trip knowing I’ll be in good enough health to go? Why am I so tired from doing basic tasks like carrying groceries? Why do I have to spend so much disposable income on a CT scan for a disease that I didn’t ask for?

And when those thoughts come, I know it’s time to seek out the big guns. And that it’s also maybe time to start dating a radiology tech for free medical care, if I can swing that. There’s such a stigma to seeking mental health care in our world: people think it makes them weak, or that it implies some kind of defeat. I personally think taking charge of your mental health is one of the most important and brave things you can do. And the more we all talk about it, the more we normalize it and make it okay for others to seek out help when they need it. People aren’t meant to be islands–– it’s okay to need a little help sometimes. Or a lot of help.

And while friends and family are awesome, there are actual professionals out there who specialize in helping people deal with the repercussions of chronic illness. When it comes to physical illness, your body can really be affected by your mind. Crohn’s disease specifically can be made worse by stress, which is a pretty cruel and unusual never-ending cycle. So if you think about it, you can’t really effectively treat the body without also treating the mind.

Cat pillows are also great for my mental health.

One kink in this plan that I do have to address, though, is cost. The state of mental health care in the United States, at least, is pretty abysmal. People (ahem, insurance companies) don’t prioritize it the way they should, so care is often prohibitively expensive–– hard to deal with when you’re already stressed about paying your other medical bills. That being said, there are other (free or cheap) resources you can seek out to talk to someone. There are hotlines to call and support groups both online and at a number of hospitals and medical centers. If you’re a student, mental health care is often free on campus. Some really nice employers even offer assistance programs where you can get a certain number of counseling sessions for free!

So while a lot of people might feel uncertain or embarrassed talking about going to therapy, I don’t think it needs to be some big state secret where I make up an elaborate lie about how I’m going to Bingo every Thursday night. Just like my medication infusions, or my check ups, or my trips to get blood work, therapy is one of the many tools in my arsenal I have in the fight against chronic illness. And it’s a damn good one, if I do say so myself.