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The Unexpected Lesson I Learned When I Was Diagnosed With IBD as a Teen Girl

If it’s not one thing, it’s always another.

In my experience with inflammatory bowel disease (IBD), that saying has proven true many times. If it’s not a fistula, it’s joint pain. If it’s not a hernia, it’s an abscess. I always bounce back, though, because what else can you do? With a disease as unpredictable as Crohn’s disease, there’s not much else you can do but dodge the bullets as they come. For three years, I‘ve been able to have a seemingly “normal” life. But not without that phrase lingering in the background, because, above all else, it still holds true. It’s always another. It’s always another.

I was diagnosed with IBD at 14 years old. When the disease struck, it struck quickly. Overnight my entire life had changed before my eyes. I’ve dealt with almost every complication the doctors tell you are “rare.” But I’ve survived — and to be honest, I’ve thrived. Here I am at 25, having had this diagnosis for over 11 years now, and while it has altered my life tremendously, it has also left me with a pocketful of humility and lessons learned. And for that, I am grateful.

But being diagnosed with something like Crohn’s disease or ulcerative colitis at a young age is difficult — more so, I believe, for a teen woman at that middle, awkward point of puberty. Imagine being hit with a diagnosis like this at the start of your formative teenage years, and even worse, before you had even begun high school. It strips you of an identity you hadn’t even started developing yet.

At the start of my diagnosis I dropped weight rapidly — 30 pounds in two weeks. You could see bones poking through my skin every which way. Everyone, including me, thought I was dying. When I was discharged from the hospital the first time, I was too weak to walk. People gawked at me as my dad carried me to and from the car for hospital visits until I was strong enough to walk again. I felt like a pariah.

I was already struggling with my outward appearance before I was diagnosed. My features were changing. I had just started to learn the concept of eyeliner. I was trying to mirror magazine covers. I wanted to feel pretty, and really at that age, it was all I cared about. In one fell swoop, I was hit hard with a dose of reality: IBD doesn’t care.

I’ve looked in the mirror at times and didn’t even recognize the person looking back. I’ve stood there, gangly and bony. I’ve stood there with puffy cheeks and a distended stomach. I have even stood there at my doctor-recommended “normal” weight and felt ugly, detached. I wanted to crawl in bed and hide. Over the years, I’ve learned to accept the fluctuations (and to keep varying sizes of clothes down in the basement). We, as women, already face so much pressure to look a certain way. As a sick woman, the weight of these expectations feels tenfold. Not to mention that my body is covered in scars. I’ve had more than 20 surgeries at this point. When I was a teenager, all I wanted to do was cover them up. I hated them. I was ashamed of them, my body. Now, at 25, I bare my scars wherever I go. They are the markings of strength and a persistence to fight that I didn’t even know I had in me. One day I just decided I can’t beat myself up over something I can’t control.

Two weeks ago, I had fluid drained from my abdomen because “scar tissue seeps,” something I never knew was a thing — until IBD. Having felt pretty good post-procedure, I woke up this morning with what could very possibly be my fourth fistula. Like I said, if it’s not one thing, it’s another.

Having IBD has helped me to realize your outward appearance isn’t everything. Before my diagnosis, I thought it was. After having mourned that ideal, I feel happier, more free. IBD has also made me more patient and more compassionate. Because I’ve learned to deal with one thing at a time with my disease, I use each obstacle as a chance to grow. Rather than fighting new problems, I take a breath and remember that at this point, I can get through anything. I’ve managed to take a phrase that has such a negative connotation and turn it into motivation to remain positive, no matter what comes my way. In doing so, I’ve become a stronger and more aware individual. So even though there’s always something, I’m always ready when that “something” comes.

alicia aiello featured
Alicia.

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