Coping | IBD | Ostomy
Ready, set…play. I stood up in front of my class as the video started. Palms sweaty, heart racing, my eyes glanced around the room trying to gauge the reactions
of my peers. The images of my previous hospitalizations and the reveal of my ostomy bag were plastered all over the screen. Unable to read my classmates
expressions I closed my eyes tight and held my breath until the video was over. The video ended and the lights went back on, but still I kept my eyes shut. And then I heard…applause? I opened my eyes and everyone was standing, applauding me and asking to see the video again. My video was the only one in the class to elicit such a reaction. I was…surprised. Shocked. Relieved.
My classmates who I had known for 3 semesters now knew something about me that they wouldn’t know just by looking at me. This silence is one of the biggest problems for people with an “invisible” illness such as Crohns. They now knew that I had both a chronic illness AND a colostomy bag, and to my surprise, didn’t run out of the room screaming in horror. My disease didn’t bother them, didn’t gross them out like I thought it would. My having a bag of poop hanging off of my waist didn’t gross them out either. So what had I been so afraid of? I spent hours upon hours everyday trying to layer my clothes the right way to hide my bag and make sure to muffle the lovely sounds of digestion that seem to occur at all the wrong times. Suddenly, this big secret was revealed and I didn’t feel like I had to hide. I was relieved. My video caused such a reaction and chatter from my peers that an article was published about me on my schools website.
My classmate’s response gave me a new perspective on my life and a serious boost of confidence. I had spent years hiding behind my disease, letting it dictate what I did or didn’t do. I realized though, when my classmates didn’t cringe, that I was a fool for thinking they would. Today, two years later, and ostomy free, I can make any poop or fart joke known to man without blinking an eye. I am open and honest about my disease and it all started when I got the “guts” to press play.
Hyperlink(video): https://vimeo.com/34374004#
Hyperlink(website): https://www.thenewshouse.com/story/skin-deep
Its stories like these that help me get through my day. Ive never been in a situation like yours but I have also been diagnosed with crohns and colitis. its a very simple, yet powerful video.its a shame that more people dont “like” stories like these….
Hope all your years ahead are as bright as your smile !
Good for you. In this day and age just about everyone has something they do not wish to share about themselves. Times are changing and people are growing up; being able to accept our differences and look at the person for who they truly are. Maturity and civic-minded people who can understand the pressure it takes to reveal something so overwhelming gives me a whole new perspective on life as well! You have inspired me and others as well I’m sure. You are a beautiful women and I wish you nothing but the best this life has to offer. 😉
Alicia,You are a brave, articulate and talented young woman and I’m sure you will succeed in whatever you decide to to. Thank you for sharing your story with us and with your classmates. I believe the reason they were not “grossed out” is because they were to see a beautiful person you are in front of them talking about surviving a hideous disease. By speaking out you are chipping away at a lot of stigma and misinformation. You should be very proud of yourself!
Thank you for your courage. My five year old was diagnosed with UC about 7 weeks ago and my days and nights have been spent wondering what her life will be like. Seeing a glimpse into your courage and ability to share has been a big encouragement. I hope you continue to do well.
Thanks for sharing your story. Your video was awesome! Yay Hahnemann and philly girls with IBD!