The Economics of Illness

Being sick is expensive. Being chronically sick is extra expensive, because it never ends.

Among the many parts of being sick that I often think about when I’m thinking “damn, this is unfair,” that’s honestly what I think about the most. Being sick is exorbitantly, life-ruining-ly expensive.

There’s the typical costs that everyone probably associates with an illness–– hospital visits, fancy new medications, procedures and CT scans. Thanks to insurance (LITERALLY thanks, Obama) these costs are seriously lowered, but “lowered” from their crazy high initial costs still comes out to “too much money for a 24 year old with student loan debt.” I think that’s the technical total on my last hospital bill.

Those are what we call the direct costs. It’s estimated that the average patient with Crohn’s pays about $18,000 per year in direct costs. Basically, if I didn’t have Crohn’s I could take the money I saved and buy a brand new Volkswagon Jetta every year for the rest of my life. I would love a goddamn Jetta.

Hospital visits ain't cheap, but they are incredibly stylish.

But that’s just direct costs–– this doesn’t include the many other things the chronically ill drop cash on. Here’s a quick rundown of (usually expensive) alternative treatments and things that help ease the pain: essential oils, epsom salts, icy hot patches and creams, heating pads, special health foods, supplements, acupuncture treatments, therapy, etc. Every human with an Instagram these days seems to be trying to sell me a protein shake or a cookbook that will cure me. But the thing is, a lot of times when you’re sick, you’ll try anything that just might make you feel better. And that keeps racking up your costs.

At the end of the day, sick people are dropping fatty cash trying to get to the minimum level of functioning at healthy people wake up with every day.

I plan for my future knowing that while my peers will be making car payments and whittling down their student loans, I’ll be doing all of those things plus trying to pay to keep my Crohn’s at bay. Chronic illness is like having a really shitty extra monthly utility bill that you didn’t ask for, but instead of giving you A/C, it keeps you alive. That’s one of the reasons I’m a politically active person–– it’s easy to think that things like health insurance don’t matter all that much until you’re the one who needs help. It’s easy to think your vote doesn’t matter when you’re healthy, but for people like me, laws like those that make it illegal for companies to discriminate against pre-existing conditions are of phenomenal importance.

Without health insurance, the liquid gold they pump into my veins every 8 weeks costs a cool $20k

If I don’t have insurance, I can’t get my medication. If I can’t get my medication, my body stops tolerating food. If I can’t eat, I can’t live and work and be a functioning member of society.

So when it comes down to it, it’s not just impersonal dollars and cents and figures presented in pretty charts on MSNBC. It’s people like me, working and saving and buying kombucha.

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.

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.

I Kind of Need You to Stop Asking if I'm "Better"

It’s rare, in this wacky journey that is my chronic-illness-having, that I openly express frustration. That’s mainly because I don’t think it’s all that productive, and I have had productivity beaten into me for all of my honors student life. I’d much rather spend my time talking and commiserating with other cool, chronically ill people, or educating friends and family on what it’s like to have a sickness that isn’t going away. But some days, the frustrated part wins. It wins hard.

The frustrated part comes out when my steroids are giving me insomnia, and I only slept three hours a night this week. The frustrated part comes out when my hair starts falling out every time I touch it. The frustrated part comes out when I realize my meds have given me a weird hand tremor and suddenly I feel way more like someone’s great aunt than like a 24 year-old.

But socially, the frustrated part comes out when someone asks the question I’m constantly dreading: are you feeling better?

The reason I dread this question so actively is because there are no answers to it that will make the people in my life happy–– which is something I desperately want to do. I would love to tell you that yes, in fact, I have miraculously come out of this flare and it will probably never happen again and, as it turns out, I am healthy as a horse. Turns out, though, that would be as honest as telling you that I just met Beyonce and she asked me to model her new athleisure line. Which is to say it’s a big old lie, or just a dream I had once.

I’m not a total pessimist. Some days I am feeling better! And in the moment you ask, I just might be. But the problem is, I’m living in a really long flare. And when this flare ends, I’m not sure how long I’ll have until my health turns on me again. That’s the nature of chronic illness: unpredictability. I have good days and bad days. Honestly, it changes down to the minute. Last week I called my mom in the morning to tell her I was feeling better than I had in weeks and I was ready to take life on–– and by 6 PM, I was in so much abdominal pain I was crying on my bedroom floor, popping Norco like it was a pill in Ibiza. (Am I using that pop culture reference right? I haven’t been out in a while.)

So when you ask if I’m feeling better, I feel obligated to tell you yes, because it’s understood that it’s what you want to hear. If you have a chronically ill person in your life, I’m not saying you should assume they feel like shit all the time and not ask at all. But there are ways to talk about illness that come off as genuinely curious and helpful that don’t make the person in question feel bad for not feeling better. Great things to say include “Hey, just checking in to see how you’re feeling. Thinking about you,” or “Can I come over and watch Unbreakable Kimmy Schmidt with you until we both melt into the couch cushions?” Showing you care and are trying to get it will go a million and one miles to getting someone to open up to you about how they really feel–– which might not be better, but will be important to hear.