I feel honored to have been given the opportunity to write a guest blog post for The Great Bowel Movement about what it was like for me to open up about my IBD and finally embrace my community. As many of you know it has been a long process for me and I really cannot thank everyone who has supported me enough for all of the love and courage you have given me.
Please visit www.thegreatbowelmovement.org to check out everything Megan and Andrea are doing to help empower those suffering from ulcerative colitis and Crohn’s dsease!
Vulnerability Takes Guts
In this guest post, Marisa discusses how learning to not be embarrassed helped her find her place in the IBD community, and used her experience to reach out to others.
Read Marisa’s whole story on her blog, appropriately named, Keeping Things Inside Is Bad For My Health
Finally Sharing my Story with IBD was the Best Thing I Ever Did
In the beginning of last year I had been dealing with 12 years of ulcerative colitis, 14 major operations and was just a couple months into battling another auto immune disease. I was receiving steroid injections at my stoma site and just couldn’t leave the house for fear that the bag, which I had finally given into having, would come off at any moment.
I thought I had reached rock bottom, or somewhere close. But then I came across three words from a blog post I had randomly (or fatefully, perhaps) come across – “Never Stay Quiet.” These three words that were so simple, struck something in me one day as literally the only thing I could do, if I had any chance of getting through the next day, or hour rather.
I walked upstairs into my parents’ room and proceeded to say out loud everything I had been trying so hard to keep inside. I was screaming and crying for a little less than three hours about so many things. The anger, the frustration, the lack of control, the longing to be normal, the enormous guilt, the loss of the person I used to be were just some of the emotions that had been eating away at my very core with seemingly no place to go.
Little did I know that the night I was able to acknowledge my need to open up and allow my emotions to run free would end up being a turning point for me.
I then started slowly reaching out to other Ulcerative Colitis and Crohn’s Disease patients through the internet and was able to achieve what I needed more than anything in life at this point: to see I wasn’t alone, and to embrace my community.
Marisa’s Got Guts!
As I began feeling more comfortable sharing my experiences with fellow IBDers online, I was nudged into participating in what I would call the weekend and event that changed my life, Get Your Guts in Gear. GYGIG holds two day bike rides that raise money for research and awareness for those suffering from IBD/ostomy.
That weekend last June was the first time I was able to completely be myself with a group of people who all knew and understood what living with inflammatory bowel disease was like. There was no hiding, no pretending, no need to be fake… it was the first weekend I had,probably since prior to my diagnosis (at the age of 13), that I was able to just be me and have FUN.
After this weekend, I dabbled with the idea of blogging and then early one September morning I sat down, and didn’t get up until I had written out my entire story to share with everyone.
I was finished hiding. I got a taste of what life was like as just me, Marisa, and not the embarrassed Marisa I portrayed to the world, and it was pretty great.
I decided I was finished putting on a phony face. It was time to “come out” and share who I was with the world. So I blasted my story and blew countless people who were very close to me (but had no real idea what I had been through) away, and a week later thanks to the outpouring of love and support I had received, I started my very own blog.
I cannot even put into words adequately enough the way my life has changed since I have been able to be a more open and honest person about my disease. IBD is a terrible illness for so many reasons. The things it does to a person’s body and mind is truly heartbreaking and devastating but I have really learned that letting other people in can make life so much easier. Allowing yourself to be vulnerable with the people in your life that love you is incredibly powerful.
We can’t go through life with our guard up all of the time. While suffering from an illness like Crohn’s Disease or Ulcerative Colitis, and/or living with an ostomy may be embarrassing and hard to talk about, I promise you if you start the process slowly with a couple people you trust (or via the internet which is somewhat anonymous) you won’t feel like the weight of the world is on your shoulders all of the time.
Follow Marisa on her blog, Keeping Things Inside is Bad For My Health
Learn more about Intense Intestines’s Never Stay Quiet Campaign
Get involved with Get Your Guts In Gear, the Ride for Crohn’s and Colitis