What you see is not what’s happening. I put on a positive face. I post pictures of me grinning from ear to ear while awaiting the latest colonoscopy, or hanging out in a hospital. I cheer others on to keep fighting, never give up, and enjoy life to the fullest. Everyone says “You look so great!” “You’re so brave and strong!”
I don’t feel brave.
I don’t feel strong.
I just refuse to show it.
Well, here I am, unable to sleep, in pain with nothing to relieve it, and I’m tired of hiding. Guess what, world? This SUCKS! I may smile, and say “it’s okay,” and act all positive, but you don’t see me when I’m alone. When there’s no need for pretense or social norms, I crawl up in bed and cry. Yes, me, I cry. I get pissed. I lie here and think what’s next for me? My Crohn’s does NOT seem to get under control even though I’m on high doses of the “best medicines” available. I’ve gone through Cimzia, Humira, I’m allergic to Remicade but maybe I can try it again, and Entyvio is new, but what if those last two don’t work? What if Prednisone, meant for a temporary fix, still can’t do the trick? Is this my life? How bad will this get for me? I’m not even 30, people! I haven’t hit 30 and I’m somehow running through these drugs faster than the friggin’ roadrunner escaping a coyote. I’ve been on Humira since what last November? December? They increased the dosage end of January, and my Crohn’s is SPREADING?!
No, I know, I’m not bad off yet. It could be worse. I already know what worse is like. I see other people dealing with worse. And it’s not that I’m afraid of dying. I’m afraid of living a long, painful, useless life. What if I’m too sick to enjoy the world around me, permanently? What if I can’t be for my grandkids what my grandmothers were to me? Will I be too sick to give them their first surfing lesson, or take them shopping, or go to a trampoline park? Will I have to stop doing everything I love? Because, that, to me, is the real fear. Welcome to the dark side of Crohn’s.