i would say in my lifetime, ive been at least 3 different people living inside one body. 1.there was pre-diagnosis kelly – uneducated & niave. if you would have asked me what i knew what chronic disease meant, i would not have been able to form any sort of response. i didn’t know what it meant to be empathetic, only sympathetic. big difference. 2. then there was post-diagnosed kelly. this kelly was lost for a long time. i didn’t have a lot of friends to lean on that knew exactly i was going through. i felt like i was living in someone else’s body that was not my own. i felt most alone in my entire life during this time.. until i had met some amazing life-long friends at my CCFA-WI chapter. this brings me to today. 3. im not sure that present kelly has a special name like “pre or post diagnosis”, because im constantly learning things everyday; about my diseases, mostly about myself.
post diagnosis: in college, i was lucky enough to have roommates that understood i didnt feel well a lot of the time. there are many times a day when i am in a visible flare that i hear comments about my appearance. 99% of my friends know i deal with a “type of condition” that causes me to have severe pain and periods of time that i may be sick enough to visit the hospital for several days at a time. they may not have understood the disease, but they understood i didnt feel well & they treated me well – stayed in with me and watched movies, played video games and did fun things that didnt always involve eating or drinking. that being said, there were of course, and always will be, people who never understood my condition, and that has been a challenge for me. i was far from being the normal college student: i had a huge tupperware container full of prescriptions & had to carry around a pill box that beeped every 4 hours to remind me to take my pills. at this time of my treatment, i was easily taking upwards of 30 pills a day. i kept my huge storage bin of prescriptions hidden most of the time so they wouldn’t get stolen and so i wouldnt look like a drug addict! in addition to the prescriptions, i began receiving IV therapy (Remicade) once a month which required me to visit the hospital for 6 hours while the drug was being infused. this drug made me tired, sore & cranky. still, my roommates were accepting. “fun kelly” was able came out to play sometimes, and when she did, it felt liberating to know that i was still able to do some of the things other college kids did. “fun kelly” still comes out to play sometimes, but as ive aged, many priorities have changed. i would rather sit in on a friday night drinking tea, watching a movie than going out and being social. i still love to play nintendo. secretly, the things we did as kids are the things that still make me the happiest. yes, i have peter pan syndrome! overall, i had the choice to let crohns rob me of many things growing into a grown adult, but i did not let it take my youth.
one thing i know for sure: a huge part of who i am today is a result of the two…. im so much more today than i was then. im much more aware about my surroundings and the world i live in. im sure a lot of that has to do with maturing and growing with age, but due to being diagnosed with something as scary as i was at such a young age, i was forced to mature quickly. i left pieces of myself along the way, good and bad. but today im able to advocate for myself. autoimminue disease is a daily battle, and one must be willing to fight for their bodies every day, knowing that some days you may not come out on top. still, you have the choice to become a victim of it, or rise above it and find new ways to make you stronger. im not a naive 17 year old anymore with no knowledge of my diseases. although i may never understand the wonders of the human body or why i have a genetic disease that no one else in my family suffers from, i understand the most important thing:
throughout this all, i may have strayed away from my true self at times, but i never lost myself completely. I’m still me.