Coming out of the IBD closet
I was diagnosed with Ulcerative Colitis in May of 2009...approximately 3 weeks before a 1200 mile road trip that I had planned months earlier. This trip was a reunion with some of my favorite friends and I was going to do all of the driving with my boyfriend. Oh did I mention we had planned to hit 4 amusement parks on the way there and back? I remember a few weeks before this trip and a few days after diagnosis writing my boyfriend an email telling him about my diagnosis because I was too mortified to tell him in person. I just went back and reread it. It was heartbreaking. I was so embarrassed and humiliated having to tell him what I considered to be very private details at that time.
I continued with this overwhelming embarrassment for roughly the next year. I decided to go on that road trip, and got really sick at the tail end and instead of hitting roller coasters, I was puking in a Starbucks bathroom. When we got home, my hospitalizations started, and it was there in a hospital bed that I finally told my parents of my diagnosis. It was also there, that I made them promise me they would NOT tell any other member of our family about my disease. I just couldn't handle the embarrassment. I couldn't handle everyone knowing I had an ass disease. I continued to be in and out of the hospital for the next 6 months or so, sometimes just weekly ER visits and other times week long hospital stays. Each time, I made my immediate family members lie to our extended family about why I need help caring for my house/dogs while I was gone. I'm sure it looked like I was on "vacation" a lot during that that time.
While I started being a regular at the E.R, I also started to balloon up on steroids, miss days from my job and slowly realize that my medications were not working. I had a heart surgery around this time, which was caused by an adverse reaction to Asacol. Even then, while in the cardiac ICU unit at the hospital, I still made my family promise not to tell anyone.
By January of 2010, my GI had given up on me and sent me to Cleveland to see a GI there. That GI told me to start thinking about surgery. This is right around the time that I started my blog Blood, Poop and Tears. Looking back, I'm not really sure why I started it. I think I know, but I really just think I needed a place to scream into the world. I needed a place to think aloud without causing stress on my family.
Little did I know that my blog would be the gateway drug to my happiness. My blog documents my whole UC journey from pre-surgery until today and when I look back over that time there is one thing that stands out the most. My attitude. Somewhere during that process I went from hiding in embarrassment, to walking the streets of Chicago telling perfect strangers about my ass disease and doing it with a smile. I started being a counselor for Camp Oasis, teaching those kids its ok to have IBD, while teaching myself the same thing. Somewhere deep into this journey, I stopped being ashamed, and started being proud and that simple process of changing my attitude has changed lives.
I can't explain what the exact moment was, or what the exact catalyst was, but something in me changed when I started telling my story to strangers on the internet. I found people who understood. People that could give me advice and people who later started asking me for my advice. I realized...I had a voice. And now here I am, a powerful voice for the IBD community (at least that's what I tell myself!). Through my blogs, networking and now on Girls With Guts, I get to tell my story, other people's stories and hopefully be a source of information and hope. I realized the importance of advocacy and awareness now because none of us would be so mortified of IBD if there was more awareness about this disease. Once I started to tell my story, I realized I could make this journey easier for others. When I was diagnosed I was hidden in the back corner of the IBD closet and now I am out with a megaphone telling every willing ear about IBD, my jpouch, the details of my inner plumbing and our amazing community of people.
I urge you ladies to tell your stories. I know the embarrassment and shame that goes along with IBD, but I swear, telling your stories is the first step to acceptance and also your door to helping someone else. There is no reason to tackle IBD alone! My mission in life is to help other IBD patients. It is my passion and a labor of love. And it all started when I stopped being afraid to tell my story.