I'm A Comeback Kid

It’s fair to say this past year has been one of the most hellacious of my life. 2016 seems to have sucked for everyone –– from losing some of Hollywood’s greatest legends to losing our goddamn minds at the polling place, this is the year that launched a thousand memes about the sheer garbage fire of it all.  

Behind probably only the year my parents got divorced, this year is number 2 worst ever. It could have it’s own trophy for shittiness. And it’s easy, when you’re having an unfortunate series of events, to not look on the bright side. When I’m doubled over in pain or trying to figure out how to pay exorbitant medical bills, people who talk about looking on bright sides make me want to punch them in the face. Hard.

But lately I’ve taken to being that person for myself, and as it were, it’s nearly physically impossible to punch yourself in the face. As I’m on a self-described “upswing” from my personal longest flare ever, it’s a little easier to find the bright sides. It’s easier to reflect now on the things the last year of garbage has brought me–– aside from painkillers and a geriatric bedtime.

This year has brought me new skills. I’ve gone from a girl who got dinner from her local taqueria several nights a week (and pizza rolls for the rest) to a girl who is currently multi-tasking–– writing while keeping an eye on my spinach tortellini soup. I taught myself how to cook. I joined a gym to fend off all the prednisone weight. I took up meditating to keep myself from going insane with all the time I spent in solitary, sick kid confinement. This year forced me to become an adult in ways I otherwise would have continued putting off for another decade.

This year brought back old loves. Not the literal, romantic kind because hey–– I spent most of this year chilling in pajamas and it hasn’t been super sexy. But as an English major and major book nerd, I spent the first 22 years of my life reading incessantly, before life and a full time job got in the way. Being sicker than usual brought me back to reading. I’ve read an impressive amount of books in the past year and have no intentions of slowing down anytime soon.

This year strengthened bonds. They say you find out who your friends are when times get tough, and that’s been abundantly true. I’ve solidified the fact that my “ride or dies” are actually down to be there for the dying in pain part. My best friends still want to be my best friends, even when I’m too sick to go out and be a very fun friend. I have rarely felt quite so loved as I have in the last 10 or so months.

This year taught me appreciation. I will never again view my body in the same way. I’m not saying I’m about to go train for a marathon anytime soon, but I’ve gained a new appreciation for the things I can do physically. My body is like the Little Engine That Could, working way harder than everyone else’s just to keep me functional. Since I now know what it’s like to have days (or months even) where walking up a flight of stairs is hard, I am now decidedly here to make the most of the good days–– which includes saying yes to things I never thought I would, like signing up for a ballet class, and climbing a rock wall, and planning my first trip alone abroad.

I like to think I’m still myself in all the essential, important ways. I’m just maybe a better, more grateful, better educated me. I’m never going to be one of those people running around talking about how I’m “grateful for my disease.” If I had 3 wishes with a genie right this second, wish number one would absofuckinglutely be that I wish I was healthy. But since genies seem to only exist in Disney movies, I’m accepting things and moving on, and trying to catch some bright sides along the way.

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.

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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.

Friends With (Medical) Benefits

When you’re chronically ill, it’s easy to get caught up in your own stuff. When you spend most of your days in some level of pain and discomfort, it’s easy to think you’re the only one struggling. But lately I’ve been thinking more about how my struggles with Crohn’s affect the people around me, and the ways caring about a sick person can make you feel kind of helpless.

While having a chronic illness is definitely a huge daily challenge, I can also easily see the challenge that comes from seeing someone you love sick with no light at the end of the tunnel. That’s why I don’t get offended (or at least I try not to) when people ask if I’m better. While I’ve come to terms with the fact that I will never be “better” by traditional standards, I can’t necessarily expect my loved ones to come to that acceptance so quickly.

Luckily I’ve been surrounded by some exceptionally supportive people. My friends and family prove to me every day that even if not everybody “gets it,” I am at the very least blessed with people who care enough to try. I could easily write a novel about the many ways in which these people have helped me, and I hope I tell them enough how appreciative I am of them.

Kelsey (front and center) has been my best friend since I was 10, and she does  things like having her whole PA class wear purple for World IBD Day because she is a better friend than any human deserves.

So for anyone with a chronically ill person in their life, here’s the best advice I can give you on how to be a good friend to a sick person, as evidenced so flawlessly by my wonderful best friends.

Listen up. Honestly, the biggest thing you can do is provide a commiserating ear. One of the biggest issues I deal with in terms of my illness is guilt–– guilt that I’m bothering the people I love with my complaints about my symptoms. But when you’re going through a patch of bad health, new symptoms can seem like they’re popping up every day, and it gets incredibly lonely if you have no one to vent to. Luckily, I have a few friends who I know I can text no matter what with unsolicited complaints such as “My joint pain is making it hard to eat my cereal. Send help.”

Don’t Question Limitations. Listen–– people with chronic illnesses probably already feel guilty about the various accommodations they need. So if they tell you they can’t spend long amounts of time out in the heat, or that they need a certain amount of rest between activities, don’t question them or pressure them to push through.

Be a cheering up squad. People with chronic illnesses often suffer from depression, because having a chronic illness sucks. It isolates you and makes you feel like you aren’t in control of your own body or life. I’m very good at hiding my own bouts of sadness because I don’t want to burden anyone. That being said, it means the world when a friend sees through the facade and realizes I’m in need of some encouragement–– whether that means a care package from my mom or a nice note (I adore snail mail.) My best friend Sarah recently brought me back a stuffed Baymax from Disney World, and I was so freaking touched to have my own personal healthcare companion that I pretty much tear up every time I look at him.

Not only do I have my own Baymax friend, but I have evidence of his adventures at Disney!

Celebrate small victories. For the average person, going on a walk or staying up past 10 isn’t an accomplishment. But for a chronically ill person, these little things can be huge. I recently got the okay from my doctor to taper off my steroids, and my best friend Kelsey has texted me every. single. day. To wish me a happy taper day 5, or 7, or what have you. It means the world to know that someone cares enough to check in, and also that someone else gets how exciting this seemingly small step is for me.

If you’re grossed out, don’t show it. I have Crohn’s disease. Gross stuff happens. A good week for me during this flare involves not having internal bleeding. There are plenty of people in my life that I have to lie to in order to spare them from the unfortunate GI symptoms that are my daily life. You know who I don’t have to do that with? My best friends. If they ask me to hang out and I can’t because of some strategically gross Crohn’s symptoms, I now send them this video and no more questions are asked.

Show up. The amount of friends and family who came out to my CCFA walk was overwhelming and lovely. The amount of friends who have given up a Saturday night to watch movies with me on my couch until I fall asleep at 8 PM is heartwarming. I’m of the opinion that bar-hopping friends come and go, but the people who will hang out with you when you aren’t very fun are forever.

So if you’re the friend or family member of someone with a chronic illness, know that we love you. We love you when you get it, we love you when you don’t exactly get it, and we even love you when pain-induced insomnia makes us cranky jerks. So thanks for being extra kind in a world that needs it. And to my sister–– thanks for the cookies.