I’m usually preoccupied with what my Crohn’s disease feels like, but lately I’ve been consumed by what it looks like. I look in the mirror and I see a woman who looks sick. My clothes don’t fit; they hang off of me. I don’t like to look at myself when I’m getting dressed because I know what I’ll see, a skeleton. I don’t have enough color in my face; people often ask me if I’m tired. And I’m always carrying around my cell phone and rushing back to my desk at work in fear of missing a phone call from one of my doctors. Even now, as I type this, I’m staring at the unforgiving black screen on my cell phone, waiting for my doctor to call and set up my Remicade infusions.
I call-in sick to work when I can’t get out of bed because of the pain, and I leave work early some days for doctor’s appointments. And eventually people start to ask why. Some people simply share their concern, “Are you okay?” Some people get right to the point, “You’ve lost a lot of weight. What’s wrong with you?” And some people have no concept of what’s appropriate, “You’ve lost too much weight. You can stop now.” Sometimes I share what I’m going through and sometimes I’m intentionally vague. And yet, however inconvenient these questions may be, they got me to thinking. If I don’t start talking about what I’m going through, how can I expect people to understand?
So little by little, I started sharing my struggle. I talked to a teacher at my daughters’ school who has ulcerative colitis. She has become a great support for me each day when I drop off my daughters. We talk about how we’re feeling, what medicine we’re trying, and how much we miss coffee. Then she encouraged me to join her in the Take Steps for Crohn’s and Colitis walk this summer. I was hesitant at first because I knew this meant fundraising, which meant sharing why this cause is so important to me. But I decided to put on my big girl pants and register with the team, and I’m so glad I did. Since then, I’ve built relationships with other people suffering from an inflammatory bowel disease (IBD) and I don’t feel alone anymore. I’ve learned to be brave and say, “Yes, I’m a Crohnie”.
Creating this blog is my next step in sharing with others my experience with Crohn’s disease. It wasn’t easy for me to create this blog and to commit to putting it all out there, but if I can let someone else know that they’re not alone, then it’s all worth it.