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.

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.

Sisterhood of the Traveling Pajama Pants

A little under a year ago, I was going through the chronic illness thing alone. Aside from twice-yearly gastroenterologist visits where I got my magic pills refilled, I rarely talked about having Crohn’s. Hell, sometimes I even forgot I had it. It was a magical time where I dated and danced and drank and ate nachos like there was no tomorrow.

But right around last Thanksgiving that all started to change. My magic pills stopped working. I was (attempting) to live my best Los Angeles life when my symptoms took on new levels of life-sucking. And then I ended up in a hospital a few miles from the beach wondering how things got so far from the life I’d imagined so damn quickly.

It was a few months later that I began blogging about my experiences with chronic illness. As a writer who was too distracted by my symptoms to think of much else, it seemed like a natural creative outlet for me–– and a great way to avoid ranting my loved ones’ ears off.

In the months since, my symptoms have gotten better, and then way worse, and then better again, and then worse, and then–– you get the idea. Life is a weird roller coaster, my particular ride just happens to involve more pain meds than the average. But the blog part of this crazy ride of life has actually brought me something really beautiful: the online chronic illness community.

Unless you’re a sick kid yourself, you probably aren’t aware that #Crohns and #ChronicIllness are super popular, active hashtags on instagram. #ChronicLife will get you a constant stream of results on Twitter. Facebook is full of private support groups for people with pretty much any kind of illness you can imagine.

I spent the first several years of my disease feeling pretty alone in it–– I didn’t know anyone in real life who had it, and all the articles I read online were full of stuffy medical jargon. Finding the little corner of the internet devoted to real people with the same problems I have has been comforting. If I’m having a bad day, one visit to the #Spoonie hashtag will net me dozens of people to commiserate with. If I’m having a good day, I can spread the positivity and love the same way.

Infusion day selfies are a thing, who knew

So while my last post may be about how the internet is ruining us, I also believe the inverse: the internet has brought me some really nice people who know better than anyone else how much of a celebration it is to taper off of prednisone, or how bad it sucks on days you feel like you don’t own enough heating pads.

And in fact, blogging about my situation has also opened my eyes up to the fact that I was previously mistaken–– I know plenty of people in real life who are dealing with chronic illness. They’re just doing it pretty quietly, the way I used to. I’ve had old middle school classmates reach out, family friends, people I met once at a party. And the thing is, even though we may have nothing else in common, having this one huge thing makes all the difference. It bonds us in a weird sisterhood (or brotherhood, hey dudes) of people who “get it.”

So to my fellow chronic illness-havers, out there, keep on keepin’ on. Keep sharing your stories of how to make Humira shots less painful and what foods you make that don’t rile up your intestines and what exercises are easy on your joints. Keep sharing pictures of you on good days playing with your cute dogs or out for drinks with friends or binging Netflix because you want to, not because you don’t have the energy for anything else.

Thanks for the constant reminder that no one is ever as alone as they might feel, and that the roller coaster has as many ups as it does downs.

***

In a bit of shameless self-promo, the lovely people of the online chronic illness community nominated me for a health activism award. If you feel so inclined, you can vote for me here. Leonardo DiCaprio and cute kittens everywhere will thank you.

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.

I'm Bad At Keeping Secrets

I’m not someone who has many secrets–– clearly, considering my social media footprint is as big as a continent.

But I do have a few, like the level of embarrassing songs I sing while cleaning my house, or the 90’s celebrities I still occasionally have dreams about marrying. My biggest secret as of late? I’m feeling better.

You’re probably asking yourself why the hell that would be a secret. After 8+ months of Saturday nights in, a monumentally bloated face, and a diet more restrictive than Beyonce-inspired veganism, wouldn’t I want to shout “I’M FEELING BETTER” from the rooftops?

Other things that will make you feel better: new lipstick, dramatic hair changes.

Yes and no. I’m thrilled to be feeling better. I’m thrilled to be weaned off prednisone. But what most normal-health-functioning people don’t realize is that for the chronically ill, “better” is a spectrum. I don’t go from sick to well in a day flat. When I say “I’m feeling better,” it simply means that currently, I’m having more good days than bad days, which is something to celebrate.

But if I take that celebration public, I’m nervous about the response. I’m nervous that people will assume “better” means I’m back to my vodka drinking, burger eating, dancing-til-the-bars-close self (and believe me–– I wish that were the case. That girl was fucking fun.) I’m worried if they get it in their heads that I’m “better,” they’ll assume all the bad days are behind me. They’ll expect too much, and they’ll be disappointed.

So I guess I’m outing my secret right now–– I’m feeling better. My hair stopped falling out. I’ve started to drop some of the weight prednisone packed on me. I’m getting more sleep. I can occasionally eat candy and chips and not worry my intestines are gonna fall out of my butt as a result.

On the flip side, the fatigue still lingers like a bad ex-boyfriend who won’t stop texting me. I still go to bed at around eight most nights. I still take ten pills a day, on average. I still have to stick to a diet of mostly bland foods like fish, bread, and eggs. I’m still dying for a cheeseburger and a big ass sangria.

Feeling good enough to spend the day with my best friends and their moms a few weeks back

So maybe instead of saying I’m better, I’ll just say I’m on an upswing. I can finally see the light at the end of the tunnel that’s been this flare. I know now that an autoimmune disease isn’t something you can just ignore and hope it goes away–– it’s part of my life, and I’ll always be at risk of another life-altering health situation. But I’m choosing to be cautiously optimistic about the parts of me that are feeling better. And I’m choosing, based on writing this, to stop keeping it a secret.

So HEY GUYS, I’M FEELING BETTER. Let’s just celebrate the news at like, 5 PM so I can still be in bed by 8.