I was diagnosed with ulcerative colitis in 2005. My diagnosis was changed to Crohn’s disease in 2012. If you know me now, you probably think of me as the girl who never shuts up about my disease.
However, if you knew me in college, when I was diagnosed, you might have known I had this thing called ulcerative colitis, I’d missed a few weeks of school, and sometimes I missed class. Maybe you noticed that I didn’t always go out on the weekends. If you were on the RA staff with me, I may have asked you to trade shifts once or twice. That’s it.
In college, there were no “Ask Me” shirts on this body. Even if I’d known about them, I wouldn’t have worn one.
I’m glad I waited so long.
In the early days, I was mourning. I was in no position to help anybody else or be a good source of information. I was too busy doing all kinds of other very important things. And no, I’m not saying “very important” all tongue-in-cheek. For me, all of these things were important parts of the process and my IBD journey.
I was struggling with my body image. I’d lost so much weight before I was diagnosed, only to go up three sizes in a matter of weeks on Prednisone. I spent time crying in dressing rooms, my dorm room, and my parents house about how “big” I was and “Why does my body haaaaaaaate me?” I was going on shopping trip after shopping trip with my patient mother while I tried to find clothes that made me feel slightly better about my puffy face and breakouts.
I was adjusting to my medications. I had such bad reactions to Prednisone at first that I spent my mornings trying to eat things that I didn’t want to eat, just so I could avoid throwing up the drug. I spent over an hour in my “breakfast, a little bit of medication, more breakfast, a little more of my medication, repeat” routine. I had to move my 8:00 am class in my schedule to give me more time in the morning for this.
I was learning. At first, I didn’t understand the severity of Inflammatory Bowel Disease. I was learning, reading about the diseases, and learning about other people who had them and were still kicking butt at life. I had a lot to learn before I was ready to start talking about it and answering questions.
Basically, I was coping. I think learning to live a normal life with IBD, learning about the disease, and overcoming the initial grieving process were important steps before I began speaking out. I wouldn’t have been helpful to anyone if I was crying about my fat face and throwing up Prednisone. I just wasn’t ready yet.
Sure, I still have bad days. I still struggle with my body image sometimes. I still become embarrassed sometimes after I have an accident. But I still don’t talk about those things in the moment. I wait, process them, and then I share about it. I truly believe you have to help yourself and take care of yourself before you can help or educate others.
What about you? If you have IBD, did you take a while before you shared your story? If you don’t, is there something else you waited to talk about?