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.

I'm Not a Hypochondriac.

I’ve always been a sickly kid.

I had pneumonia 9 times before the age of ten. I grew up using a breathing machine every few months. When I was fourteen, my eyes were mysteriously crossed for three months, to the confoundment of every doctor I visited. For two years in high school I suffered from debilitating chronic migraines. I’ve had pretty much every test and procedure a human can have at this point, from EEGs to CTs to colonoscopies.

And when I was 17, I was diagnosed with Crohn’s.

My time as a professional sick kid started before I could walk or talk

When you’re sick all the time, people tend to want to find simpler explanations. And the simplest explanation of all, it seems, is that it’s all in your head. It’s a lot easier for people to stomach that you want attention, or are just a bit anxious and neurotic, than that a teenage girl is just legitimately ill, and often.

So because of that, and because it seems I’ve been sick with some odd illness or another since before I could talk, the hypochondriac comments have also been a hallmark of my existence. It doesn’t help that as an adult, I’ve also suffered from anxiety and panic disorder. If you’re mentally ill, it’s super easy for everyone from doctors to acquaintances to chock up your physical symptoms to something you’ve made up in your mind.

But here’s the thing–– being chronically ill sucks. It’s physically trying because hey, pain, but it’s also mentally trying for a number of unfun reasons. And one of the biggest reasons? Feeling like you have to prove to people how sick you really are.

When people reach for the hypochondriac thing, it makes patients feel like they have to prove themselves–– and believe me, they can. My illness is “invisible,” but I could show you blood panels that “prove” just how high the inflammation in my body is. Better yet, if I’m feeling particularly sassy, I can show you a picture of the inside of my colon. Because I have it on my phone.

Point being, you should never be making an ill person feel like they have to prove themselves to you. I know it sounds unbelievable that I’m flaring yet again, or that I’ve got another infection. But since I’m the one who has to deal with that physically, instead of opting for emotions like disbelief or skepticism, go for support. Honestly, the best thing a person could give most sick patients is unyielding support and belief.

And when you don’t believe someone who’s sick, you’re probably also making them doubt themselves, which can be bad for their health. Because I had grown up with bad internalized feelings surrounding feeling like a hypochondriac, it took way longer than it should have for me to be diagnosed with Crohn’s. I thought having stomach aches on a daily basis and not being able to eat was somehow a thing I had done to myself. That’s why, while my diagnosis was one of the hardest things I’ve ever dealt with, it was also a relief–– I wasn’t crazy. There was something actually, medically wrong.

While there are always going to be people out there who exaggerate their symptoms for attention or who genuinely are hypochondriacs, the number of those people is much smaller than the number of people actually suffering every single day from random diseases and weird aches and pains. So before you call me a hypochondriac, think about just being a kinder human instead. Unless of course you really want to see the inside of my colon, because we can make that happen, too.

Can I Live?

The internet is ruining us.

The internet is my lifelong bad boyfriend. I love it, and crave it’s approval, and at this point, it literally pays the bills. 99% of the time, I think the internet is the fucking best–– especially when it gives me cat gifs or videos of porcupines eating corn on the cob.

But as with almost all great things, there’s a downside. When you have access to everyone’s thoughts and opinions, you have access to everyone’s thoughts and opinions. And sometimes, those opinions suck.

Take random internet opinions (like mine) with a grain or 50 of salt.

Back yonder when people still actually had to show up to plans they made because they couldn’t bail via text, the only opinions on our choices that really mattered to us were those of like, our family, our good friends, and our dogs. But now, thanks to the inconceivably massive reach of the internet, opinions are flying at us from all directions, all the time. People who think we should all be gluten free versus people who think gluten allergies are made up. People who think breastfeeding is the only surefire way to make sure your child doesn’t grow up to be a serial killer. People who think Scott Baio deserves a shot at political commentating.

The thing about all the people behind screens with their opinions is that they don’t know you. Or even if they do–– even if they’re the pastor’s wife at your church or your best friend’s new girlfriend–– they don’t necessarily know what’s best for you. We choose who to confide in, who to ask for advice, for a reason. We pick our best friends because we trust them, and we know they know us better than anyone else. I know which one to go to when I need a sympathetic ear. I know which one to go to when I have an ill-advised crush. I know which one to go to when I need someone to pull me back to reality. And none of those people are bloggers or twitter personalities or talk show hosts.

When you’re chronically ill, you’re bound to come across just about every opinion possible on how you should be living your life–– not only socially and politically, but also health-wise, which at best is annoying and at its worst can be dangerous. You’ll have people blogging about how yoga cured them, or trying to sell you a diet plan, or worshipping at the altar of essential oils. You’ll have friends of friends sending you articles about “cures” and randoms implying that you brought your disease on yourself by eating too many carbs or spending too much time watching TV as a kid. The thing about these opinions is that for pretty much any opinion that exists on the internet, the inverse of it exists as well. So maybe put down the Google and just talk to your doctor and some fellow patients and friends that you really trust.

I trust this one's opinion because she's known me for as long as I've been alive.

So next time you’re on the other side of things and tempted to take a hard stance on something and make a sweeping judgement, bite your tongue–– both so you shut up and so you start having a Pavlovian response between being judgey and being in serious mouth pain. If you hear someone talking about how they plan to adopt, remember that you don’t know the ins and outs of their situation and refrain from yelling “BUT YOU’RE MISSING OUT ON REAL MOTHERHOOD,” like a giant douche. If someone tells you they send their kids to park district pre-school, don’t launch into a lecture about how kids need to learn Portuguese by age four. If someone tells you they don’t eat meat, maybe just live and let live and don’t talk about how great the lamb you had last night tasted.

Moral of the story here is try not to be a dick, let people live their lives, and if you need a break from internet opinions, turn your phone off and play with your cats until you forget your step-grandma’s judgey, Trump-supporting Facebook account exists.

C’est la vie, yo.

Celebrities- They're Just Like Us!

If you follow celebrity news as ardently as I do, you probably already know Selena Gomez has lupus.

But because I realize not everyone keeps up with the Kardashians and checks TMZ on the regular, let me catch you up. About a year or so ago, Selena Gomez (former Disney star, current pop star, for the truly uninitiated reader) went on the Ellen Show and announced that the reason she’d been MIA from the spotlight was that she’d been undergoing chemotherapy to treat her lupus. It also explained the weight gain that paparazzi and some rude 12 year olds had been hounding her for. “Selena Gomez has lupus” made headlines for a few days, and then everyone by-and-large stopped discussing it.

Until now–– Selena’s autoimmune disease has twitter abuzz again because she’s taking time off of her tour because of it. I commend anyone who chooses to go through their chronic illness in such a public forum, whether it’s educating a stranger at a party or educating millions of fans via Instagram. But Gomez is taking it one step further in my mind and making it all that much more admirable.

The singer’s statement doesn’t just say she’s taking time off due to physical symptoms, but rather specifies that she’s struggling with anxiety, panic attacks, and depression, all of which have stemmed from her disease. She easily could’ve pinned her problems on strictly physical stress, but she’s going one step forward and tackling the mental health stigma while she’s at it.

I have a hard enough time dealing with the trials and tribulations of a chronic illness, and I work a normal 9-5 and spend most of my free time resting. I can’t imagine the toll a world tour would take on someone with an autoimmune disease. And with that physical toll, as any sick person can tell you, comes a mental hurdle that can be even tougher to clear.

When you’re sick, it’s hard not to be anxious–– you have to think about everything. Any scenario that might happen has to be planned for. There’s also anxiety present in the fear of letting others down: is my sickness making my friends and family’s lives harder? And there’s the ever-present anxiety over what people think of you: do they think I’m talking about my illness for attention? Do they think I should be pushing myself harder to be normal? Do they think my illness is my fault?

For a celebrity, I imagine the fear of what people are thinking and saying about you is magnified on a global scale. And while I just sit here and wonder if people are saying something bad, Selena Gomez can pick up a tabloid and see the things they’re saying about her.

And when all of that anxiety and physical illness compounds on itself, it’s no wonder that so many chronic illness patients deal with depression. Having to put your life (or your successful world tour) on pause because you’re too sick can make you feel pretty hopeless. It’s easy to go down a mental black hole and think you’ll never get out.

But here’s why Selena’s case is relevant to everyone–– she’s doing the exact best thing she can be in this scenario. She’s listening to her body and mind and taking time to rest, even when I’m sure doing so was a difficult decision. She’s refusing to let expectations dictate her health. And not only that, she’s being open about her experience. Rather than claiming exhaustion or hiding behind some PR-spin excuse, she’s sharing her experience with lupus (and the mental illness that goes with it) with her fans and the world.

I heard that after her announcement, searches for “what is lupus?” went up exponentially. The more people with a platform use it to create awareness for autoimmune disease, the less patients have to suffer. So if you’re feeling braver than usual and want to educate others on your illness, channel your inner-Selena Gomez. Just don’t run out and try to date Justin Bieber, okay? Kid seems like bad news.

The Glamorous World of Traveling With Chronic Illness

In the immortal words of The Go-Go’s: Vacation, all I ever wanted.

Vacation is fucking fantastic. You get to take time off of your job and real life and instead spend it in some exciting new location. You get to eat and drink and shop like there’s no tomorrow, because things like credit card bills and extra pounds are a problem for your post-vacation self. Vacation-you is great and carefree. Vacation-you is your best self.

A particularly good wall for taking vacation pics

But when you’re chronically ill, sometimes even exciting stuff like vacation can have a black cloud of anxiety hanging over it. While a normal 24 year old has to think, “did I pack my floppy hat? Is it too much if I bring my selfie stick?” a chronically ill traveler has a much longer list of concerns to deal with.

Among these concerns includes, but is not limited to: whether their body can handle the weather in their given destination (those with diseases like POTS often can’t be out and about in extreme heat and humidity). Whether or not they have their full supply of meds for the length of their trip. Whether or not there will be easy access to bathrooms (aka, camping is difficult). What hospitals are near their hotel. What they’ll be able to eat at their destination. Whether or not they’ll be well enough when the time comes to actually go, or to enjoy their time on the trip they’ve spent time and money planning.

When you take all of that into account, it’s no wonder a lot of chronically ill folks are hesitant to commit to trips, no matter how fun they may be. I’ve definitely said no to travel plans because I knew they’d push my limits too much. But that’s not to say I never travel, or that I can’t–– as a matter of fact, I just returned from an absolutely awesome girls trip to Nashville. I just have to be smart about it and always plan ahead. So without further ado, here are my ~expert~ tips for traveling with a chronic illness.

Taken after a long day of eating, getting tatted, ghost touring, live music, and more eating.

Choose your travel companions deliberately.

If you’re struggling with a chronic illness, nothing will add to your anxiety more than traveling with people you aren’t comfortable with. It’s hard to advocate for yourself and your needs in general, but even harder if you don’t know your travel buddies all too well. So maybe try to avoid a big trip with your boyfriend’s whole extended family or a backpacking excursion with your co-workers and instead opt for those who know you best, like close friends and family. Nashville was made much easier by the fact that I was with two lifelong best friends who never questioned it if I needed to take a break or pop some pills.

Bring ALL THE MEDS.

Don’t just being enough for the days you’ll be gone–– you never know when a flight might get delayed and you could be stuck in a strange city for an extra day or so. Bring extras, and don’t keep them in your checked bag! Airlines lose luggage. It’s a sad fact of life, like how we sometimes have to go to the DMV or kiss our great uncles. Keep your pills on you at all times so your lost luggage doesn’t turn into a medical crisis. And remember that big pharmacies like Walgreens are nationwide and can usually supply you with an emergency refill enough to last a few days.

I may not have been able to eat any of this BBQ, but I can still appreciate its beauty.

Make your own fun!

Because of my Crohn’s, I can’t currently drink. This has the potential to make most vacations kind of suck. But as cliche as it is, “you don’t need to be drunk to have fun!” holds true if you want it to. Instead of getting blackout like every bachelorette party in Nashville, I focused my attention on other fun stuff, like eating biscuits and taking pictures in front of basically every Instagram-worthy wall in Tennessee.

Don’t be afraid to ask for accommodations.

Need early boarding? Ask. Need a wheelchair to get around the airport? Ask. Never be afraid to advocate for yourself. Some people might get weird about it, but those people suck anyway and should be handily ignored. I have a card that I carry with me at all times saying I may medically need to use the restroom at a moment’s notice and legally requires businesses to let me use theirs. At home I’ve never had to use it because I’m pretty well-versed on where all the best unlocked bathrooms are–– but in a new city it was really comforting to have it in my wallet, especially in touristy areas where every shop advertises “no public restrooms.”

The view from my Friday night in Nashville: my hotel bed

Take charge of plans.

I’ve always been a planner, so this part comes naturally to me, but taking charge of planning can do a lot to ease travel anxiety. I have some pretty extreme dietary restrictions, so I dealt with that by thoroughly researching Nashville’s dining scene ahead of time. I knew where I could eat and where I couldn’t and presented options to the group that would make everyone happy. In the end, we all got some bomb ass biscuits, and what else do you really need?

Rest when you need to.

This last bit can be hard. When you’re on a vacation that you spent money getting to, staying in a hotel you’re paying for, you’re going to want to make the most of it. You’re going to want to go non-stop, seeing everything there is to see. But it’s important to listen to your body if it’s yelling at you to stop. On my last night in Nashville, instead of doing some Dolly Parton karaoke, I was laid up in a hotel bed drinking ginger ale and watching reruns of Law & Order. While this isn’t the ideal way to spend a vacation, I’m glad I listened to my body–– pushing myself too hard has only ever made me sicker, and I was still able to pack plenty of fun into a four day trip even with that night of rest.

So go forth and see the world! Just do your research first, and maybe bring a heating pad.

Why Am I Not An Olympian (Or, Ramblings of a Crazy Person)

I found out about Kathleen Baker's Olympic silver medal at 3 AM.

I wasn't awake to watch her take on the 100m backstroke because I'm almost never awake past 9 PM anymore. And that's because Kathleen Baker and I share the same disease.

I found out when I woke up at 3 AM with some nightly steroid-induced insomnia. Because I have wonderful loved ones who are crazy supportive of me and my struggles with Crohn's, I checked my phone to see no fewer than four texts that all said something along the lines of: the girl who just won silver in the backstroke at the olympics has Crohn's!! *american flag emoji*

My first emotion at the news was excitement. Because that's awesome! Damn, good for this girl! I did the world's quickest Google search and saw all the headlines about Kathleen "overcoming her disease" to win an Olympic medal. I work in social media and PR, and it's exactly the awe-inspiring stuff people love to click on.

Now the only emotion I feel is a crazy amount of CONGRATS

But after my cursory glance at Google, I got a little sad and I couldn't put my finger on why. This was a fellow Crohn's patient succeeding in one of the biggest arenas in the world! And then I put voice to the thought that goes through my head whenever I see someone who's chronically ill achieving some crazy feat–– if they can do it, why can't I? What am I doing wrong?

Now let's speed past the logic part that says I'm not doing anything wrong, she just spent her entire life training for the Olympics and I didn't. Duh. The point is, sometimes when a sick person sees an ~inspirational tale~ of another sick person overcoming all odds to win an Oscar, or become an astronaut, or win an Olympic medal, they feel a little beat by their body. It's one thing to say "hey, I probably can't achieve greatness when my body barely wants me to achieve alive-ness." But it's harder to tell yourself that when you see someone surpassing those odds.

So rewind back to my Google anxiety hole–– I'm sitting here, berating myself for not being an Olympic medalist and also for not being healthy enough to do basic stuff like go to bars with my friends. I'm wondering if I'll ever be able to achieve the things I want to in life. Or, in a darker thought, if I'll ever be able to achieve anything of note.

I'm not an Olympian, but sometimes I DO hike a small incline just for the Instagram

But then I did some reading, which is an activity I recommend for anyone who thinks they know everything. I read this great article that not only made me cry–– it pointed out all the sacrifices Kathleen has had to make because of her Crohn's. You see, in my mind she was a super human, laughing at all of us mere mortals who were stuck in bed thanks to our symptoms. Now I know she's just like me–– I focus all of my energy on holding down my job, and doing the best work there that I can possibly do. She does the same thing, it just so happens that her job is being a badass freaking Olympian. 

It's a great reminder that when you're sick, you can still accomplish (almost) anything–– but you can't accomplish everything. I can write for a living, I just may not be able to like, run my own production company where I oversee 15 hit shows (like a certain Shonda Rhimes). Kathleen can swim in the Olympics, she just may not be able to compete in every single event she might like to. Maybe there's an alternate world out there where Crohn's doesn't exist and I'm the next Mindy Kaling and Kathleen has 25 gold medals.

But in this world, we're working with what we've got. And I think we're doing a pretty bang up job.

2016 is Halfway Over?

I never imagined I’d spend my 24th year in bed.

Well, maybe I did, but in my imagination it was maybe in a more fun way involving traveling to Europe and meeting a whimsical Italian man and spending my 24th year in his bed.

Or not. Sorry mom and dad.

But seriously–– I just saw a tweet about how “2016 is halfway over!” and I went slightly insane. The Crohn’s flare from hell started for me in early February, which means I’ve officially been sick for 5 out of the 6 months of this year. Not exactly the New Years Wish I had in mind, you know?

My 24th birthday, and coincidentally the last hurrah of my 2016 social life. I didn't know when this picture was taken, but I was days away from the worst autoimmune flare of my life thus far!

But, I think it also says some important things about expectations. And how we need to get rid of them all together. Possibly a dramatic statement, but bear with me. Whether you’re sick or not, everyone my age seems to be rushing around, worrying they’re going to miss out on something. Some magazine somewhere once called it FOMO and that stuck in the way annoying acronyms do, so let’s call it that.

Which is to say that we only feel like we’re missing out because we subscribe to some random belief that there’s a certain set of experiences we should be having, and that if we aren’t having them, we’re somehow doing life wrong. If we aren’t traveling the world at 21, we’ll be bitter old people one day who talk about how we never got high in Amsterdam when we had the chance. If we aren’t at the top of our career game by 25, we’re probably doomed to mediocre cold-calling jobs for life. If we aren’t going on dates every weekend, or having babies, then we aren’t living up to expectations.

Consider this, though: whose expectations are they? Are they honestly your own, or are they just expectations you have because tv and movies and your great aunt made you think there’s a timeline on which life must be properly lived?

Being forced to spend the first half of my 24th year in bed has taught me a little bit about priorities, and about throwing those expectations and five year plans out the window. Now, instead of asking myself “what do I need to do today to be on track so I don’t miss anything?” I tend to think more along the lines of: “what can I do today to be happy?” And honestly, it’s a shift in thinking that has made a world of difference.

My main Friday night companions.

I still want to have a job I love. I still want to have some major achievements, like getting a book published. I still want to get married, and have babies, and travel. I still want to have fun experiences like publicly urinating at a music festival or something else young people are supposed to do. But I’m no longer going to rush it and worry about the timeline. 

And if some of those things don’t happen for me? That’s okay too, because there’s a very wise quote out there that goes something like “You can do anything, but you can’t do everything.” So instead of rushing through life trying to do everything, I might take a nap. Or watch Orange is the New Black. Or play with my cats. And all those little happy moments will amount to a pretty cool life.

How I Learned To Embrace My Inner Introvert

I always thought I was an extrovert.

In retrospect, I always tried to be an extrovert, because I thought that was the correct way to be. Who doesn’t want to be the life of the party? Introvert, for some reason, had negative connotations to me. Shy. Unapproachable. Anti-social. All things that I was taught from an early age were disadvantageous to be. So I made myself loud and boisterous–– the center of attention. It took me way, way too long to realize that in almost every situation where I was forcing myself into that role, I was wildly uncomfortable.

As I’ve gotten older, I developed pretty bad anxiety. It had to do with a lot of things–– my brain chemistry, some pretty long-ingrained perfectionism, and my Crohn’s diagnosis, to name a few. But it was far too hard with my rising anxiety to pretend to be the most outgoing one in the room all the time. This was both a blessing and a curse: I was self-conscious that others would view my new “personality shift” as weird, but I also felt so much more comfortable in a middle ground.

Me in my natural habitat: at home with blankets.

Don’t get me wrong, I still enjoy attention as much as your next narcissistic writer. But as I’ve grown into myself as an adult (especially an adult with a chronic illness), I’ve enjoyed shifting that attention to a more behind-the-scenes approach. Rather than needing to be the one yelling out a funny story at a party, I’m content to express myself through writing. Instead of forcing myself on stage, I wrote a web series and cast some friends as the leads. It’s been all about finding a happy medium. I still love to talk and meet new people, but I’ve realized I don’t need to force myself to command a room.

But then my illness got worse, and things got a bit more extreme.

For someone like myself who’s often been self-conscious about my introvertedness, being forced to stay in due to illness can really get my anxiety going. My thoughts can go from zero to doom-spiral in 60 seconds flat: do people think I’m just rude? Anti-social? God forbid, boring? And when people say things like “I’m so jealous, I would love to lay in bed all day!” Or, “You went to bed how early? That sounds great!” It can make those anxious thoughts even worse. Even though, as an introvert, I love staying in every once in awhile, staying in because of my illness isn’t a choice I’m making–– and believe me, most Friday nights, I’d way rather be doing anything but going to bed at 8.

But thanks to some nice friends and paid professionals, when that doom-spiral comes a-knocking, I remind myself of one simple fact: people don’t think about you nearly as much as you think they do.

One of the best people to stay in and build a gingerbread house in matching onesies with.

The attention-loving part of me has a pretty intense imaginary audience complex, as we all do to an extent, that believes that when I miss a party or a night out at the bar, everyone is sitting around wondering (and discussing) why. In reality, when I miss a night out at the bar, most of my friends wish me well thoughts and then go down a few tequila shots and make some bad decisions. For good or bad, I am not the crux of their thoughts for the evening.

The shitty thing about anxiety is that it’s not also simple enough as remembering logical thoughts like that, because anxiety is, by nature, illogical. But it has helped to remember that the real friends I have are never going to bail because I stay in on a Friday night. In fact, some of them might join me. With puzzles. And ginger ale. And season five of “Scandal.”

"I'm totally fine, guys!" Or, On Being Chronically Ill But Also a People Pleaser.

I can be a real people pleaser, especially to people I don’t know very well.

Maybe it’s the way I was raised (as a child, my dad once threw up in his teacher’s car and then tried to hide it, as not to make any waves). Maybe it’s the overly hospitable Midwesterner in me. Maybe it’s that thing that seems sadly ingrained in a lot of women where we just never want to be *gasp!* a bother.

Whatever it is, I have a deep seated need to never make anyone uncomfortable. I will go to great lengths to keep this up–– I didn’t hear what you said? I’ll nod and smile and pretend I did! You want to buy me a drink but I think you’re a creep? I’ll probably let you and then just hope you go away! You want me to buy the weird teflon nail polish you’re currently selling through your aunt’s friend? Put me down for 16 bottles.

People pleasing runs in the family, as does a love of Mt. Vernon and wearing stripes.

In life, this just makes things occasionally awkward and weird for me. But in terms of my illness, it can actually cause some problems.

As it turns out, when a doctor or other medical professional asks how you’re doing, you’re supposed to actually tell them. Wacky, I know. The standard, “Oh I’m great, how are you doing?” is slightly less convincing from an emergency room stretcher. And being coy about your symptoms can really hurt you. If your doctors don’t know what’s wrong, or how much pain you’re actually in, it’s hard for them to treat you.

A standby response for me at gastroenterologist appointments for years was “mostly I feel normal.” Each time, their response was the same: my definition of normal is not the same as a healthy person’s definition of normal, and I could be doing better. But how do you redefine normal? Normal for me has been a steady homeostasis of stomach aches and discomfort. So how do I put myself in the shoes of a healthy person, and then describe what I feel from there? What’s it like to not be in at least middling amounts of pain every day?

Add on to those questions that I have been blessed with some pretty crippling social anxiety–– I’m constantly worried about what other people are thinking of me. If I’m having a bad pain day, and I tell you as much, is that going to be seen as dramatic or attention seeking? Everyone worries about what others think to some extent–– but I’m actively trying to take doctors out of that equation. If there’s one person with whom you should be being totally honest about your symptoms, it’s them. Your doctor is not someone you are trying to impress at a party, they’re there to gather information and help you feel better. (Unless, like me, one day you get a really attractive young GI fellow asking about your bowel habits. In that case you should giggle a lot and stop forming words, like I did.)

The moral of the story is, people pleasing isn’t all bad. Except when it puts your health in jeopardy. Or when it lands you at a really lame acquaintance’s baby shower because you don’t know how to say no.

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.