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.

2016 is Halfway Over?

I never imagined I’d spend my 24th year in bed.

Well, maybe I did, but in my imagination it was maybe in a more fun way involving traveling to Europe and meeting a whimsical Italian man and spending my 24th year in his bed.

Or not. Sorry mom and dad.

But seriously–– I just saw a tweet about how “2016 is halfway over!” and I went slightly insane. The Crohn’s flare from hell started for me in early February, which means I’ve officially been sick for 5 out of the 6 months of this year. Not exactly the New Years Wish I had in mind, you know?

My 24th birthday, and coincidentally the last hurrah of my 2016 social life. I didn't know when this picture was taken, but I was days away from the worst autoimmune flare of my life thus far!

But, I think it also says some important things about expectations. And how we need to get rid of them all together. Possibly a dramatic statement, but bear with me. Whether you’re sick or not, everyone my age seems to be rushing around, worrying they’re going to miss out on something. Some magazine somewhere once called it FOMO and that stuck in the way annoying acronyms do, so let’s call it that.

Which is to say that we only feel like we’re missing out because we subscribe to some random belief that there’s a certain set of experiences we should be having, and that if we aren’t having them, we’re somehow doing life wrong. If we aren’t traveling the world at 21, we’ll be bitter old people one day who talk about how we never got high in Amsterdam when we had the chance. If we aren’t at the top of our career game by 25, we’re probably doomed to mediocre cold-calling jobs for life. If we aren’t going on dates every weekend, or having babies, then we aren’t living up to expectations.

Consider this, though: whose expectations are they? Are they honestly your own, or are they just expectations you have because tv and movies and your great aunt made you think there’s a timeline on which life must be properly lived?

Being forced to spend the first half of my 24th year in bed has taught me a little bit about priorities, and about throwing those expectations and five year plans out the window. Now, instead of asking myself “what do I need to do today to be on track so I don’t miss anything?” I tend to think more along the lines of: “what can I do today to be happy?” And honestly, it’s a shift in thinking that has made a world of difference.

My main Friday night companions.

I still want to have a job I love. I still want to have some major achievements, like getting a book published. I still want to get married, and have babies, and travel. I still want to have fun experiences like publicly urinating at a music festival or something else young people are supposed to do. But I’m no longer going to rush it and worry about the timeline. 

And if some of those things don’t happen for me? That’s okay too, because there’s a very wise quote out there that goes something like “You can do anything, but you can’t do everything.” So instead of rushing through life trying to do everything, I might take a nap. Or watch Orange is the New Black. Or play with my cats. And all those little happy moments will amount to a pretty cool life.

Love and Light and Purple Tutus

Meet Lizzie, the most fabulous girl at all of Take Steps Chicago

Sometimes the world can seem like an irredeemably sad place. When surrounded by hate and injustice, after I cry and get angry, I like to take a turn to focus on the small pieces of my life that bring love and light to the world.

It’s a concept I learned in therapy to cope with the day-to-day mental struggles of chronic illness–– on any given day, you can list three good things. On some days, they might be huge happies: you got a promotion, you welcomed a new baby into the family, you finally found a new medication that works for you. On other days, it can be much harder to think of three positives. But I find if I dig a little, I can always find something: the bus was there right when I got to the stop. My favorite song came on the radio twice today. I ate a really solid bagel sandwich.

Listing things that are good may sound silly–– believe me, I’ve had many friends and family goodnaturedly roll their eyes at me when I push them to find three things to be happy about when they’re having a bad day. But as it turns out, life is actually made up of these little, seemingly trivial things. Sure, promotions and babies are great–– but if you live your whole life seeking big things to sustain your happiness, it will probably continue to elude you.

So here are my three happies for today:

1. I discovered a really great new dog Instagram account.
2. I got to chat with my sister for a bit.
3. I had a really great burst of creative inspiration.

See? Nothing life altering. I didn’t cure cancer or win a million dollars, but listing out the little things is an immediate mood-booster, and a quick way to find the good in a day that maybe seemed like actual garbage before. And when that doesn’t work, I go back to some old “good days.” This past weekend was the best weekend I’ve had in a long time–– not only did I go buy stacks on stacks on stacks of used books at the Printer’s Row Lit Fest, but Saturday was finally Chicago’s CCFA walk.

I’d been looking forward to the day for months now, as I’m sure anyone who follows me on social media can attest, but it truly exceeded my greatest expectations. Over 20 of my closest friends and family showed up to walk for me, from my parents to my cousins to my co-workers to my childhood best friends and everyone in between. I’ve never felt so much love in one steaming-hot city park.

My cousins even decked out their adorable babies in homemade team shirts, a move that almost brought me to tears I was so excited and heart-warmed. I might be biased, but it probably made my team the winner in the cuteness category.

We raised over $1,700 for CCFA thanks to almost 40 amazing donors who all came together to support a girl with some malfunctioning intestines, and I can’t thank everyone enough. I’ve never been so excited to have so many thank you notes to write. I even got a chance to be interviewed about my experience with Crohn’s in an effort improve life for other patients, so in addition to raising hella cash, we also raised a lot of awareness.

So to the CCFA employees and volunteers who helped out to make the walk happen to the donors who consistently made my day to the friends who basically walked a 5k in 100 degree heat–– THANK YOU. YOU ARE THE LOVE AND LIGHT THIS WORLD NEEDS.

Take a Walk... In Some Chronically Ill Shoes.

I’ve talked about awareness on here before, and why it’s so important. It’s part of the reason I have this blog. It’s why I’m a pretty open book when it comes to talking to people (even strangers) about my illness. Awareness leads to understanding, which leads to empathy, which makes the world go ‘round, basically.

Since I’ve gotten increasingly sicker, I’ve stepped my game up a bit when it comes to my involvement in the IBD community. I’ve volunteered at events, spoken at kickoffs, and actively fundraised for the Crohn’s & Colitis Foundation of America. Some people may wonder why someone would want to spend so much time thinking about, talking about, and living around their illness, so I figured I would take this little soapbox I have here on the interwebs and explain.

Many people with illnesses (especially so-called “invisible” ones) opt to stay quiet about their experiences. This is a choice I understand and respect. For some, they do so out of a natural sense of privacy (which, as a social-media-obsessed millennial, I simply do not have). For others, they do so because they may be embarrassed about symptoms (anxiety, fistulas, and rectal bleeding, anyone?) or simply because they can’t find the words to express their day-to-day experiences with illness. And many more choose to stay silent for fear of discrimination–– publicly outing yourself as a sick patient can mean less access to jobs or even losing your current one because sometimes companies can be real dicks about disabilities.

I fall on the other end of the spectrum. I am an over-sharer by trade–– hi, writer–– and somehow lack the requisite embarrassment to stop said over-shares. I’m also incredibly lucky to work for a company that not only tolerates my illness but is actually wildly supportive. This puts me in a unique position where I’m really able to talk about the full experience of being sick.

In 2013, my walk team consisted of 6 very kind souls. This year we're rolling in over 20 deep! 

But why would I want to spend my free time writing about being sick? Thinking about being sick? Raising money and reading up and partaking in online communities, all focused on being sick? Well, it’s a fair question. It might be easier to ignore it and hope it goes away–– that was my strategy for about 5 years after my diagnosis, anyway! But here’s the thing: when your disease gets so bad that you’re in daily pain or discomfort, you can’t not think about it. It’s not a choice anymore. So if Crohn’s is going to take up so much real estate in my brain as it is, I figure I may as well try to make something good out of it.

That’s where involvement comes in. That’s why I’m volunteering for the CCFA’s annual events like their gala and Spin4 Cures. That’s why I’m active in the online chronic illness community, offering and receiving advice and encouragement. That’s why I’m so excited to walk in the Take Steps walk this weekend with all of my family and friends. If I have to be sick, the least I can do is take as many positives from that as possible, and provide as much support to others as I can.

It’s also about control (there’s that word again). I can’t control my illness. I can’t control when I have bad days, or when my body decides the meds I’m on are no longer sufficient. So things like doing a walk to raise money for research gives me something I can control–– I know I’m doing what I can, in a small way, to help myself. A cure might be a million years away, but at least in the meantime, I’m not sitting around doing nothing. I am the master of my own fate. Or my colon’s fate. Or something like that.

And the walks provide something else, too–– a place for patients to feel normal. A place to meet other patients who get it, who have been on the meds you're on, who also desperately miss eating McDonald's sometimes. A place for my parents to meet other parents of patients and commiserate about how garbage this disease is. A place for friends and family to feel less helpless about the whole situation. A place where people know the words "remicade" and "abcess" and throw them around with the normalcy in which you might say "telephone." A place to see little 6 year olds with ostomies rocking it out and smiling and laughing and think to yourself "hey, if they can be that positive and cool about all this, I probably can be, too."

AND we got shirts, because I am nothing if not a woman who loves a matching shirt.

So if you know someone with an illness, and they ask you to support them in their charitable, cure-seeking endeavors, give them your Dunkin Donuts money for the week. Head out and walk with them. It’s the little things that mean the world when you’re fighting off your own body, and every little reminder that our attempts at raising awareness and support are working does wonders for our mental health.

And to everyone supporting my walk this weekend–– my heart is full and my busted intestines are eternally grateful for your help. Thank you for helping me find my silver linings.

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.