iPhones, Choices, and Clueless Men from Utah

Early this morning, while I was taking my pills, House Oversight Committee Chairman Jason Chaffetz went on television to talk up the GOP’s new plan for healthcare.

If, like me, you have a chronic illness, you’ve probably been on the edge of your seat watching the news unfurl about the new Republican healthcare plan that some are deeming Trumpcare. And after an early look at the plan, it seems we’ve had good reason to be worried. It’s a lengthy document, but Vox has a really handy explainer here.

There are a number of things about this plan that frighten me, but before I even had a chance to examine it in full, I watched the now Twitter-notorious Chaffetz interview in which he said something that I haven’t stopped thinking about all day.

“Americans have choices, and they've got to make a choice. So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care.”

I immediately balked. Dude may as well have said "Let them eat cake." I’ve known Chaffetz to say some pretty offensive things in the past, but was this man honestly comparing the cost of healthcare to the cost of a fun new tech gadget? And furthermore, was he implying that the people like myself who are struggling to pay their medical bills are simply fiscally irresponsible?

The only explanation I can think of for such a completely callous lack of compassion for the sick and disabled is that Jason Chaffetz is superhuman. He has never gotten ill, or broken a bone, or had a loved one suffer from an unexpected heart attack. He’s never contracted a virus, and he wasn’t born with a lifelong, incurable illness with expensive medications.

And to that I say, good for you, Jason! I hope you live forever like the family in Tuck Everlasting and you never have to pay a single medical bill and you can use all that superfluous cash to buy thousands and thousands of iPhones and put them in designer cases. But for the rest of us, compassion would be nice. And nicer than that? Some sign that you’re in touch with reality.

Because reality is this: people who are struggling to pay their healthcare aren’t lazy. They aren’t spending their money on the wrong things. It absolutely does not compute to say that because you have made other purchases in your life that you don’t deserve to live, and to live with a reasonably good quality of life.

It’s probably easy if you’re healthy and your family and friends are healthy to think it’s as simple as Jason thinks it is. But here’s the thing: health is a privilege, and it’s one that can be snatched away from you at a moment’s notice and without clear reason. I’d challenge any healthy person to imagine what they might do if they were told tomorrow that they have a lifelong illness that costs $30,000 a month to treat –– because trading in your iPhone isn’t going to cut it.

Anger is a Productive Emotion and You're Allowed to Feel It.

Anger is a productive emotion and you’re allowed to feel it.

If I could, I would stitch that on a pillow and give it to everyone I know. I would also put said pillows in every room of my house.

That’s how important a reminder I think it is. I’m a big believer in letting yourself feel your emotions–– acknowledging when life is great and you’re happy, letting yourself wallow for a few hours if you need to when you’re sad. But anger is a tougher emotion for me. It’s not as palatable to the general public, so sometimes I stray from it and pretend not to feel it.

I have the opposite of “resting bitch face.” This is to say that even if I’m in a terrible mood, you’d probably never know, because the face I’m showing the world is at best, happy, and at worst, neutral. Never angry. Never upset. Never impatient. Never an emotion that might inconvenience.

So what happens when you have every reason and right to be angry? There’s such a push for positivity, which I think is great. Positivity gets me through 99% of my days. But what about the other 1%? The days where you wake up and your symptoms are so bad you can’t get out of bed? The days where your steroid-induced tremors cause you to drop a cupcake in your own lap at a family party? The days when it feels like life is one step forward and five steps back?

Do you push yourself to look on the bright side and be more positive? I’ve tried that, but in my experience trying to force yourself to feel feelings that aren’t authentic to you at the moment will generally just make you feel worse. So I’m trying something new. I’m giving myself permission to just be angry.

I’m giving myself permission to vent, whether it’s to my best friends or my mom or my journal (or this blog). I’m giving myself permission to eat a really big piece of cake and listen to “Don’t Hurt Yourself” on repeat and channel my inner-scorned-Beyonce. I’m giving myself permission to lean into the anger and truly feel it. Because when you’re young and sick and feel like you’re missing out on real life, you’ve got some stuff to be angry about. I don’t carry it around on a daily basis and let it define me, but on the particularly bad days when anger rears its ugly head, I no longer try to force it back down into a neat little box. I let it out, and it feels good.

So if you’re angry at the world on a given day–– because you haven’t gotten the promotion you deserve, or because you’re feeling underappreciated in your relationship, or because a sexual predator just won the presidency and you can’t even win a freaking sweepstakes–– really feel it. And use that anger to fuel something else, whether it’s a creative pursuit, or a foray into political advocacy, or just a really great shower sing-a-long to Alanis Morissette (the ultimate “angry and not sorry about it” woman of our time). Anger, when harnessed correctly, can make us powerful little storms, as long as we know how to control it without letting it control us. So be happy, be sad, be mad–– be whatever it is you are today, and know that it’s okay.

This is Illness in Trump's America.

I am never allowed to forget my illness. I am never allowed to turn away. Every day when I wake up and walk over to my painstakingly organized pill box, I am reminded. Every time I have to plan life around a different specialized doctor’s appointment, I am reminded. Every time a happy occasion or a night out with my friends is ruined by extreme pain, I am reminded.

And now, every time I turn on the news and see our new president-elect, I am reminded.

I am reminded that (half of) the American people chose to elect a bigot. A man who mocks disabled people, who speaks about people from other countries in a way that is terrifyingly similar to Hitler, who has sexually assaulted women. And a man who has stated again and again that one of his first acts in office will be to repeal the Affordable Care Act.

While the term “Obamacare” gets thrown around a lot, I’ve found that in conversation many people don’t actually seem to know what it means. While I am not on Obamacare, I do benefit immensely from some of the law’s major tenets. “Benefit” feels like a funny word for it, though –– benefit implies I’m getting something fun and extra, like a cupcake or a 401k. The “benefits” I receive from the ACA keep me alive and well enough to live a life that most people take for granted.

Thanks to Obamacare, companies can’t discriminate against me for my pre-existing condition. Without this aspect of American healthcare, I could easily be refused insurance by any company simply because I am actually sick. Obamacare also bans providers from instituting lifetime caps on benefits. Under the previous system, insurance companies would cover you up to a certain dollar amount, and then you were on your own. Spoiler alert: short of actual millionaires, I don’t know of any chronically ill or disabled people who can afford to be on their own.

So on election night, after they announced Pennsylvania, I cried. I cried openly and without abandon, and I haven’t stopped much since. I cried for women’s right to choose. I cried for gay couples who will have people trying to invalidate their love. I cried for Muslims, and for Mexicans, and for black communities everywhere. And I cried for my future.

I cried because I was the first kid in my class to learn how to read. I cried because I was the one who won the spelling bees, and kicked the ACT’s ass, and stayed up past my bedtime reading about presidential history and how we invented peanut butter. I cried because I have never stopped working hard, whether it was getting a 4.0 my senior year on 19 credit hours or beating out thousands of other young writers to secure an internship with a national news publication. I cried because I am 24 years-old working in a great job that I love and am good at.

I cried because all of that could be for nothing.

If the ACA is repealed and replaced with what the Republican Party says they want (which seems to be either a. nothing, or b., a plan without the concessions that chronically ill people need), I will hit my lifetime cap. I will hit my lifetime cap faster than you can say “pre-existing condition.” In addition to the expensive tests and procedures I get on a regular basis, I am on a medication that costs upwards of $30,000 every 8 weeks. It’s not hard to hit a benefits cap when that’s what you’re working with.

In Trump’s America, I have to pay $15,000 a month out of pocket. I cannot do that, as most people can’t. My only choice is to go off of my medication. Without my medication, I am not well enough to work. I become bedridden and have to go on disability. The little girl who raised her hand too much and always did the extra credit becomes the adult woman who can’t work. This is Trump’s America.

The past few days I’ve been thinking about what I want for myself in life. It’s not a long list anymore. I want the opportunity to be well. I want to opportunity to work hard, and save my money, and be financially free and independent. I want to be able to support my own children someday. I want the same things that everyone else has the opportunity to have. I don’t think I’m asking for much.

So while the past few days have been spent mourning the progressive and inspiring next-four-years we could have had, I no longer have time to cry. I have to work. I have to talk to people, and tell them what’s at stake.

I have to make sure I don’t let down the little girl who won the spelling bee. She still has work to do.

Get Out and Vote! (Or Stay in and Vote!)

This weekend I was having too rough of a symptom time to go partake in Halloweekend activities with friends –– but sitting on my couch watching The Craft started to get a little old around hour twelve or so. So I decided if I had nothing else to show for my weekend, I’d go vote. Early.

Illinois (where I live) is one of many states that allows early voting. Since I’m only 24, I’d never actually voted in person for a presidential election before. I’d voted in the primaries, and some local elections, so I think I underestimated how crazy election day would be. That underestimation was clearly evidenced in the fact that when I got to the library on a random day of early voting, there was a line out the door.

Aside from a blip on the radar of this weekend, my symptoms have been mostly improving, so I hunkered down in line with a book and waited. As I was waiting, I started to think about how other chronically ill people (who aren’t as lucky to be “on an upswing” like me) might deal with long lines at the polls. Disabled people are a hugely important voting block –– because duh, we have a lot at stake here. But standing in an hour long line isn’t exactly sick-kid friendly for a lot of people.

Instead of giving out stickers, Chicago gives you a wristband so you can feel like you're at a weird, political Coachella

That’s where it becomes exceedingly important to know your options. Know whether your state has early voting, where lines are likely to be shorter and more manageable. Know that employers legally have to give full-time employees time off in which to cast their ballots, so you don’t need to create a crazy hectic day for yourself trying to get your vote in. Know your state’s rules on absentee ballots –– for people who are ill, these are a freaking godsend. When you can barely leave your house for doctor’s appointments, leaving to go struggle around a crowded polling place is probably out of the question. As it were, though, you can vote from your couch!

There’s a lot at stake for disabled people this election (which is why #CripTheVote has become so popular). People’s access to healthcare depends upon it. Funding to the government for things like disability benefits depends on votes. Having a president who respects you as a person (and doesn’t mock disabled people in public) depends on it.

Everyday life is harder for people who are ill, and life comes at us fast. Don’t let that get in the way of making your voice heard. Don’t let an unplanned trip to the ER or a horrible symptom day keep you away from the polls –– vote now, if you can. Because while a lot of healthy, upper-middle-class white dudes can afford to sit this one out because their rights aren’t at stake here, we definitely can’t.

Not sure where to go to find out where, when, and how you can vote? Head over to IWillVote.com and find your early (and Election Day) polling places. You can also check out each state’s absentee voting rules on Vote.org.

Do it for your rights, the rights of patients like you, and for the sweet “I Voted” sticker Instagram post.

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.

I'm The Sick Girl, But I'm Everything Else, Too.

“You are not your disease.”

That’s something people like to say when you’re sick. And it’s true! It’s so true. You are not your disease. A diagnosis does not define your character. But sometimes when people say “you are not your disease,” what they really mean is “please stop talking about your disease as it is making me uncomfortable and I would like to talk about more pleasant matters, like what happened last night on The Bachelorette.”

I am not my disease. I know this. But my disease does inform a lot of the things I do and feel, because duh. When you’re in pain or discomfort on a daily basis, it’s going to inform parts of you. When you can’t socialize with your friends because you’re having a terrible fatigue day, it’s going to affect you. Accepting that goes a long way toward stabilizing your mental health. But that’s all the disease is–– a part of me. It defines me in the way that all of the other parts define me, both good and bad.

And in a flare like the present one, I do sometimes worry that my life revolves around my illness. My planner is full of doctor’s appointments, infusions, and support groups. My social media posts look like the diary of a grandma who really likes to Instagram. I don’t have exciting weekend plans to contribute at the water cooler–– just maybe a story about the movie I watched this weekend (which was Beauty & The Beast, if you were wondering. It really holds up).

I am a girl who makes my friends dress up like Taylor Swift

So today I got to thinking–– does your life center too much around your illness? What’s your identity these days aside from sick girl? And here’s what I came up with. These are all (or some) of the things, aside from a Crohn’s Disease diagnosis, that make me “me.”

I am a writer. This is central to my character and humanity. Even when I can’t get my shit together long enough to be working on a legitimate project with any sort of discipline, I am always writing bits and pieces and notes and letters and blogs and first acts of plays I will never finish.

I am a cat mom. I have embraced cat-lady-dom in full force with my little Russian Blue Alfie and my roommate’s cat, Tiny. They make my days so much more adorable and sunshiney and even writing this makes me want to devolve into a pile of baby-talking, cat-toy-buying mush.

I am a compulsive reader. More detrimentally to my paycheck, I am a compulsive book-buyer. Everything from classics to modern lit to young adult fiction to beach reads to memoirs–– I will read it. Book stores and libraries house some of my favorite memories and generally make me feel safe.

I am a Taylor Swift super fan. I know every word of every song by heart. Last summer I spent way too much of my disposable income to see her two nights in a row in Chicago. I grew up with her songs, and they will always hold a special place in my heart. I once had a Taylor Swift themed birthday party in which everyone was forcefully encouraged to dress up like her. She liked a picture of my birthday cake on Tumblr and I cried.

I am a girl who drives to Iowa on a cold Saturday to canvass for the caucus

I am a political junkie. I am a lifelong democrat who watches CNN for fun. I have a favorite political analyst (her name is Donna and she loves a sassy jacket.) #ImWithHer, and I’ve got the t-shirt and the button to prove it.

I’m a comedian, in whatever way you would like to take that. I have dabbled in every form of making people laugh from stand up to web series to sketch writing and beyond. Making other people happy makes me happy, and making them laugh is the best way I know how to do that. (There is also, undeniably, a power aspect, as I am probably a tiny dictator of fun.)

I am a volunteer. I like to give time and effort to a cause. As a kid, this took the form of community service clubs and volunteer hours and the like. Now I like to support the causes of others, speak up about issues that mean something to me, and raise money for cool organizations I feel strongly about (like CCFA.)

I am a friend. I will give you advice when you think you want to dump your boyfriend. I will make you a sad songs mixtape when you do. I will mail you a happy gift when you’re stressed, or when you’ve accomplished something awesome. I will support your startups, your side hustles, your stories and your art. I will cheer you on forever. And even when I’m too sick to make it to your party, I will send you unending snapchats of the aforementioned cat children (jury is still out on if this makes me a good friend or an annoying one, but hey.)

So that’s me. Sick girl, funny girl, obsessed-with-pop music and shirts with cats on them girl. If you’re chronically ill, I highly recommend this little activity of writing down who you are outside of your illness. Sometimes we all need a reminder that we don’t have to be just one thing, and we don’t have to fit into neat little boxes. I have a lot of messy, disorganized boxes, and those are pretty great as well.