Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.

Being an advocate for myself and bringing awareness to what Crohn’s disease is all about, is one of my favorite things to do. I enjoy it so much that it puts me in a happy place. A lot of people have seen me in this place, either in person or on social media. And sometimes I think it may appear to people that I’m this way all the time.

Maybe they think since I attend events and smile that my Crohn’s symptoms aren’t that serious or hard on me. The reality is that I show up and smile through the pain because I’m doing what I can to keep living and to uphold my responsibilities, despite my disease.

Maybe they think that because I speak positively about my future or seem empowered that I believe it and that I walk that walk all the time. The reality is that I’m utterly exhausted when the event is over, even though I slipped away to sleep for 3 hours just to be able to make it through. The reality is that I’m positive one moment, and I’m crying the next over pain and the frustration of a new symptom popping up. The reality is that I feel so angry and disheartened because my insurance won’t cover something I am looking into for my treatment. The reality is that depression and anxiety visit me every night while I’m trying to fall asleep. 

Maybe they see me as this go-getter; as this girl who gets things done. The reality is that it’s everything they don’t see that motivates me to do everything I can to ensure my healthcare is the best it can be.

And the reality is that I won’t stop. Even when I’m in pain, exhausted, angry, and not understanding why I must go through all this... I will continue to channel that part of me who won’t stop fighting to improve my life and the lives of others with IBD. I’ll always be an advocate, even when I don’t feel like being one. 


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