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.

Life is Gross and Then You Die

I watch a lot of romantic comedies.

If Hugh Grant is in it, I’ve seen it. If it involves a funny but sweet montage, I’ve seen it six times. I’m looking forward to the release of Bridget Jones’s Baby the way adult fanboys look forward to the release of a new Star Wars film (which, coincidentally, I am also looking forward to. I can have layers, okay?)

That being said, I’ve seen a lot of (fictional) romances unfold. And I can tell you this–– at no point during the funny but sweet montage does the girl bowl over with a stomach ache. At no point while Colin Firth is eventually professing his undying love does Rene Zellweger have to pause their love story for a poorly timed emergency trip to the bathroom. When Harry and Sally are driving cross-country, they don’t have to make two dozen stops at questionable gas station bathrooms. Anne Hathaway doesn’t keep a travel Pepto Bismol in her purse.

So it’s come as an unpleasant surprise at age 24 to learn that I am not the star of my own romantic comedy. I’m just Sam.

And just Sam has Crohn’s disease, a chronic illness whose main side effects are a lot of gross things that you don’t mention in polite conversation. Chronic illness in general can be isolating, but you know what’s extra isolating? Talking about poop.

Everybody poops. Especially Max. 

I agree with the commercials and campaigns that say “Crohn’s is more than just a bathroom disease.” It is! It’s way more! It’s a host of other things, like extreme abdominal pain like you’ve never felt before, and anemia, and skin rashes, and arthritis, and eye problems, and a lot of other unpleasant things. But it’s also a bathroom thing, day in and day out, and I would be remiss to run a blog about Crohn’s disease and be afraid to talk about shit like this. The literal kind of shit.

So, at the risk of jeopardizing my chances of ever becoming a romantic comedy heroine, here’s the sitch: everybody poops. Even Beyonce, and heads of state. Even the super hot girl who works at your gym. Even your fancy aunt who doesn’t let people eat in the living room. People with Crohn’s happen to do it a lot. So much so, in fact, that I think if you can’t talk about and joke about it, you’d go insane. And since you’re already going to the bathroom like a dozen times a day, you don’t also have time to deal with being institutionalized.

All within the past year, I have done the following: collected my own poop, stored it IN MY FRIDGE next to my Kombucha, and then delivered it to the hospital to be examined. I have drank a gallon of liquid laxative and then had a camera shoved up my ass. I have started bleeding out my ass and then, because I lack tact, referred to it in conversation as my butt period. I have come dangerously close to shitting myself on pretty much every form of public transit in Chicago, and a few in other cities. I have had hemorrhoids. I have had the adult version of diaper rash. I have become intimately familiar with where you can find unlocked public bathrooms.

I’m lucky, because my best friends are disgusting human beings. They can talk about shit all day. They love to be gross. I recently had a cyst burst and they spent an undue amount of time asking me about it’s contents. The universe sent me the perfect human beings to be in my life if I was going to be living as the human iteration of the poop emoji. They never ask questions when we’re on a road trip and I need to pull over. Those are friends you need.

My body does a whole variety of fun and unspeakable things on a pretty much weekly basis. It gets seriously discouraging–– becoming afraid to eat because everything you eat makes you violently ill is not a good look, and it’s a situation I’m in regularly. It also gets seriously dangerous–– dehydration is no joke, folks. But it also gets seriously more manageable if you can joke about it. As with most bad things in life, if you can find a way to laugh at it, you win.

So I’m a little nervous to post this blog, because I’m still secretly hoping Zac Efron is going to come sweep me off my feet, and I’m not sure he (or any guy) is going to be interested in a girl who has told the whole internet about how much toilet paper she goes through. But I’m holding out hope that one day I will be the subject of my own rom com, and the dude won’t care if I have to pause our passionate kiss backed by a romantic overture because my stomach is rumbling in that dangerous way.

I feel like maybe Hugh Grant would understand.

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.

Repeat After Me: Being Sick is Not a Point of Failure

There’s no definitive cause to Crohn’s disease. Like a variety of other diseases from Ulcerative Colitis to Lupus to Alopecia, it’s a mysterious variety of factors that may or may not cause illness to develop in a patient. Suffice it to say–– it’s not the patient’s fault that they have these diseases.

I definitely didn’t ask for Crohn’s disease. I was just a high school junior, living my life, studying for the ACT, working at Applebee’s, and watching way too much Buffy The Vampire Slayer. I was just like all my friends, until my body decided that food wasn’t a thing it was going to put up with anymore. And just like that, I went from healthy 17-year-old to chronic illness patient for life. My intestines did not consult me about this.

And here’s the thing–– our society places a really high premium on being healthy. Which is great! It (hopefully) stops people from eating french fries for every meal, because who wouldn’t want to do that if health weren’t a factor? It keeps us exercising, and eating well, and all of those other good, Instagrammable things. We should definitely all be aware of the parts of our health that are within our control, like cholesterol levels and BMI, as much as we can. But what about the parts that are out of our control?

When we talk about health like it’s a personal success, the problem is that we all too often then talk about illness like it’s a personal failure. So many people pride themselves on not having to take pharmaceuticals, or on getting by on yoga and their unrelenting positivity. But that puts those of us who kind of need pills and infusions and fancy CT machines in a shitty spot.

I may not have hiked the Grand Canyon but I looked HELLA athletic sitting on the edge.

So even if you think Big Pharma is evil and ruining America, please try to keep that to yourself when talking to someone with a serious illness. Believe me, we don’t want to be on all these pills. We don’t want to be dependent on so many things to get by. But we are, and it’s not something we’ve chosen. Being sick is not a failing on our part, and doing what we have to do to get through it is also not open to judgement. Believing we as humans don’t “need” pills for health is a viewpoint that all too often comes from a place of privilege. Just because you personally don’t need medication to make it through the day does not mean others don’t.

So I’m not saying we should stop celebrating the healthy–– marathon runners are crazy wonderful mutants and they deserve those medals and the little “26.2” bumper stickers to put on their Jeeps. But just make sure that when you are going after your own health goals, or talking to someone else about theirs, that we aren’t all the same. For a normal person a health goal might be training for a triathlon. For someone with a chronic disease, a health goal might be a walk around the block or, if you’re me, some incredibly low-key yoga. All options are valid and great, and one is not better than the other.

So practice a little empathy next time you’re around the water cooler talking diets or exercise regimens. We can’t all climb Everest, but hopefully we can all make ourselves feel successful in one way or another.