By Sara Schatz, Layout Editor
“Chronic Illness” is an intimidating phrase. Like its basic definition, it gives off a sense of negative permanence. When people hear that phrase, they get the heebie-jeebies. They think of hospitals. They think of the weak. They think of painful memories.
I’m not saying I don’t experience these thoughts. Yet as I reflect in my college dorm room about the eight years since my diagnosis, I can simultaneously assert that my Crohn’s Disease is one of the most important and formative experiences I’ve ever had.
Whenever I think about my thirteen-year-old self, a profound statement that Rabbi Joseph B. Soloveitchik discusses in his book, Kol Dodi Dofek, comes to mind: “With negation sprouts affirmation.” Essentially, I was an awkward, insecure, slightly nerdy eighth-grader who suddenly found herself having to become a full-fledged adult within months.
This had nothing to do with my outer surroundings, but something inside of me. I can’t pinpoint exactly when, but towards the beginning of my eighth-grade year, I suddenly found myself feeling sharp, inexplicable pains every single day, and I was lucky if I was able to get through an entire school day without having to go home. I hardly ate, losing weight rapidly and dangerously. My crazy gastroenterologist began prescribing me a “protein shake only” diet, which I would vomit up consistently.
It was at that young age that I recognized how quickly people tend to judge others. My teachers didn’t allow me to make-up tests because they thought that I purposely missed the test to take it on the make-up day. My peers thought that I didn’t come to school because I had an eating disorder, just like the girls in all the movies. My gastroenterologist thought that it was some sort of weird fluke, and in addition to the protein shakes, gave me a variety of medications and steroids, convincing herself that she was doing the right thing. And I judged myself, telling my inner thoughts that everyone’s opinions about me, albeit contradictory, were correct.
That’s the primary misconception with Crohn’s: no one can see it, so people have a hard time believing it. I knew how I felt, but no one else did. Thus, for over a year, I essentially suffered in silence.
I was finally diagnosed towards the middle of ninth-grade after eight procedures and a much-needed doctor switch. The verdict was in: Crohn’s Disease.
At the time, my parents and I were so elated that I was finally diagnosed that I don’t think we considered the long-term challenges I would face for the rest of my life. I remember my mom bought me an ice cream cake, which, in hindsight, wasn’t the best idea for someone whose digestive system was just diagnosed as being permanently out of whack. But that night, after throwing up my dessert, I recall beaming with joy.
Crohn’s is an interesting disease. Whenever people ask me about it, I find it difficult to answer them. It’s very common amongst Ashkenazi Jews, and though I’m part of that tribe, it wasn’t genetic for me. My doctor said it just sort of appeared out of the blue, which is why it took so long to reach a diagnosis. Essentially, when I eat random foods (nope, no “special diet,” though sometimes that’s what patients need to feel better), I get severe stomach pains, which, in Crohn’s lingo, we call “flare-ups.”
Due to my miracle drug (which I receive every eight weeks through IV infusions — when I used to have them in a hospital, my friends would come with me so that they could get free chocolate milk), my pain, thank G-d, isn’t nearly as bad as it used to be. Yet unpredictably, it gets pretty nightmarish. Due to my antibody-killing medication, my immune system is incredibly weak, so I’ve contracted the most bizarre, intense ailments while most people merely get colds every once in awhile. Recently, I also discovered that I seem to have contracted Crohn’s in my eye (that happens to five percent of all Crohn’s patients). All of these factors have brought me on emergency room adventures in the most unexpected places.
Though I’m not ashamed of my Crohn’s, I have trouble speaking about it with people. Not to toot my own horn, but I’ve been asked to advocate for my hospital, run in marathons with the CCFA (Crohn’s and Colitis Foundation of America), and lead support groups, but I’m never able to bring myself to do any of it. Part of it is definitely because naturally, I’m a private person. But I think it’s mostly because at this point in my life, I’ve learned to make my illness a part of me, which, though it might sound counterintuitive, I believe is the primary way to go about these situations.
Sure, I get nervous sometimes thinking about what’ll happen when I want to have kids. I get worried when I’m a guest at people’s homes and randomly get a flare-up from the food. I often grow infuriated when I wake up and my eye is red and swollen again (#Crohn’sInTheEye let’s goooo!!). But living a life of fear is not a way to live.
I decided to share these depressing thoughts and details today, not to scare you, nor to make you queasy. My goal is twofold:
- This disease, though invisible to the human eye, exists in 1.3% of Americans, you just don’t know it.
- Though “Chronic Illness” can be a debilitating phrase, there is a future beyond it. It might be initially shocking, but you’re not alone, and you’ll get through it! There’s a community of us out there — and we have chocolate milk! (Unless it gives you flare-up of course!)
And, if you do feel that the people in your life either think your illness is “just a nuisance,” or overly-empathize with you (two of the most common reactions), feel free to email me. I’m always looking to make more IBD buddies!
Yes, my Crohn’s is part of me. But my Crohn’s is not my entire being.
Feel alone about your chronic illness? Well, you’re not! Sara Schatz can be reached at firstname.lastname@example.org, and is always happy to chat!