I was really active when I was younger -- playing soccer, doing gymnastics, outside riding my bike all the time -- so not being able to do any of that stuff these days is one of the hardest things about this illness. My energy level is basically zero. But I really don't think that people who are healthy can have a true understanding or appreciation of the sort of exhaustion I'm talking about. When I say that I want to spend every day sleeping, it might sound like an exaggeration. But it's not.
I have a fulltime job, working as a resident advisor for college students with mental illness and various disabilities. I teach independent living skills and social skills, and work with adults with autism. It's incredibly satisfying, and challenging. Thankfully, the people I work for and with know about my condition, and they're okay with it when I occasionally have to take sick days. But I wouldn't go so far as to say they fully understand, or can really empathize with, what I'm going through. I know I wouldn't be able to empathize with it, if I'd never experienced it myself.
Even though I was something of a tomboy growing up, I was also always "the sick kid." I was misdiagnosed with anorexia in middle school, but I never understood that diagnosis because I never had a disturbed body image, for example, or any of the other symptoms of an eating disorder. I just had really weird eating habits -- which in retrospect, in light of my eventual Crohn's diagnosis, is perfectly understandable.
Anyway, I didn't get that Crohn's diagnosis until I got wildly sick when I was in college and spent a solid week in the hospital. Since then, I've spent time in the hospital roughly 20 times over the past eight years. I don't live too far from my parents, I see them on a weekly basis, and my mom has been by my side so often that she's spent almost as much time in hospitals as I have. She's found ways to sleep in my hospital room with me -- on a chair, the floor, an empty bed -- wherever she could find a place.
When I was diagnosed, at 20 years old, I'd never heard of Crohn's or colitis, so when I was first told about it my reaction was sort of like, "Okay. Cool. Now I can leave the hospital." I really had no concept of what it meant, or how severe a condition it was. I started reading up on it, and it was quite scary, probably because most of what I came across was all about worst-case scenarios. To some degree it was a relief to know the reason I was so wildly misunderstood by doctors when I was growing up. But a diagnosis of a chronic condition was still really difficult to process.
It also took a really long time before I could trust my GI doctor. Now he's my favorite person in the universe, but it was a year or so before I was able to let go of my own mistrust of doctors and let him in and be honest about my symptoms. I finally saw that he did care about me as a person, was vested in my well-being, and didn't just see me as a condition or a collection of symptoms or an interesting case. Until then, I was a giant bitch to him. But he totally understands why, and today we're good.
One thing I really wish someone had stressed to me when I was first diagnosed is that, as not-fun as it is to try and talk about a bowel disease, there is nothing to be ashamed of. It’s embarrassing at first, for sure. But it’s okay to let people know. It's okay to just say, "Sorry, but I have to go to the bathroom, like, right now!"
It takes practice, but you have to talk about. Be open about it. Be honest about it -- with others and with yourself. The more you talk about, the easier it becomes, with time. I guess I shouldn't be surprised by how few people have ever even heard of Crohn's -- like I said, I hadn't heard of it when I was diagnosed -- but it's important to find the humor in it, if you possibly can. I find it funny and therapeutic to Snapchat bowel movements to my friends. "Hey guys, look what I woke up to today." They think I'm weird, of course -- but they're still my friends.