Behind-The-Scenes of IBD
If you met me tomorrow, you'd probably notice a few things.
I talk a lot. I'm missing the gene that tells you to shut up and stop telling new acquaintances about the embarrassing things you did when you were 14 or how much time you spend on Wikipedia pages for unsolved murders from the 50's.
I love sneakers, and am probably almost always wearing them, even if they never actually see the inside of a gym. My pink, Old Skool Vans are one of my most prized possessions.
I have a few tattoos that I'll explain if you ask nicely.
What you might not notice?
I have Crohn's Disease, and all that it entails.
I pride myself on being a pretty open book about my disease, but I still often find myself downplaying it so I can still seem cool, fun, and carefree. I'm the "hey, my intestines are bleeding, but I still like to get drunk and eat a 2 AM hotdog" kind of 26-year-old patient. Self-deprecation has become my primary mode of communication. Rather than say "I go to bed at 9 every night because my body physically shuts down," I opt for a "I have the sleep schedule of an infant baby." People laugh, and I laugh, and it's easier.
I make little reference to the extreme pain, like nothing I've ever felt before, when I eat something that my body decides is triggering –– and how I almost never know, from day to day, what that trigger food will be. I don't draw a lot of attention to the fact that sometimes it seems like a better idea to not eat all together if I have something important to do, but how that plan always backfires when I faint mid-way through big plans because I haven't eaten.
Because this is my standard of "normal," it takes me weeks to realize that I'm sending texts every night that I don't remember sending because my iron-deficiency induced fatigue is so bad that I'm losing chunks of time. I tell people that I eat out a lot because I love fast food and lack self control, denying that on a basic level, I do it because after a full day of work and pretending not to be "that sick," I'm out of usable hours that a normal person might use to cook a meal.
I do all of this cover-up so seamlessly and so subconsciously that it wasn't until recently that I even realized I was doing it. That I was trying to cover up the slight limp I develop when my IBD-related arthritis flares up. That while outwardly, I advocate for patients, I'm often bad about remembering to advocate for myself.
So, today is World IBD Day. There's a hashtag, and I'll wear purple, and I'll send support to people around the globe who share the same shitty (pun-intended) disease that I do. But I also wanted to take a second to be honest with myself, and with the people I encounter on a daily basis, and with other patients who might look at my Instagram and think "she's out having fun, why am I so sick?" about how hard this disease is, behind-the-scenes. Even when you're not at your sickest –– right now I would consider myself reasonably healthy –– I still deal with a strange grab bag of symptoms every single day.
So if you have someone with IBD in your life, make them understand that you're comfortable with their new normal. That they can sometimes say "man, this sucks," without making a joke to assuage other people's discomfort with sick people who also happen to be young and look "fine."
And Happy World IBD Day to my fellow Crohn's & Colitis patients, who are out there every day making the hard way look easy.