Backstory on How I Ended Up Sharing My Inflammatory Bowel Disease Story

So I screwed up and thought today was the day I shared my journey with inflammatory bowel disease but it turns out… I had the date wrong and it is September 3rd :)

Inspired by my friend, Sara, who bravely shared what got her to begin her advocacy, I wanted to openly talk a little bit about why things happened to me at the time they did. It may be a bit long but I don’t really care.

First, there are a few people who played an enormous role in me being able to share my story. Starting from the beginning, I saw a video from a girl, Sara Ringer, that blew me away. I connected with her on a level I have never experienced before and immediately reached out to her.

I then saw a post from the Intense Intestines Foundation and at the bottom it said “Never Stay Quiet.” I can explain things better in the video below:

While I was having a very rough time, I also became friendly with one of the co admins of The Great Bowel Movement who pushed me into doing Get Your Guts in Gear in June of 2012. That, in and of itself, made me feel like I was part of something. I was just recently diagnosed with pyoderma gangrenosum, had been through a ton of steroid injections, and was just blown away by everything that had happened. It was amazing to meet people who understood everything and who I could talk to and say things so openly and unfiltered. I told people stories there that I have never EVER talked about with people other than my parents. And this was within an hour or so of meeting fellow Crohn’s Disease and Ulcerative Colitis (IBD) patients and caregivers.

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In July of that year, there was a comment made to me by someone I love who just made me flip out to the point where I needed to write and get it off my chest. Because I had connected with so many wonderful people at Get Your Guts in Gear, Sara Ringer, one of the hearts and souls of the IBD community, offered to post what I had written on her blog which reached so many people because she has such a huge following. This caused someone to reach out to Sara, telling her she was in a very similar situation to me, and asking if she could have my email address.

I have to say… when Sara told me that someone messaged her because they could relate to me… THAT CHANGED MY LIFE. It made me feel like just maybe I was worth something. Maybe I could help people. Maybe I did have some sort of place in this world. And I thank this girl in my mind everyday for sending that message. Her name is Kelsey<3

This was in the beginning of July so for the next couple of months I started feeling a huge need to get rid of anything from my past that made me feel like I had to be phony in some way. I unfriended a ton of my friends on facebook… only because they reminded me of needing to be fake. I deleted phone numbers. I literally only kept a very small amount of people in my life which was sad because I was someone who (when I was feeling well) had a core group of friends to hang and have fun with every weekend. Aside from one or two, most had no idea what I was going through other than I had gone through a lot of health issues. But, going out and being “normal” with them was fun and great for me at the time.

I just couldn’t mentally handle seeing anyone in my newsfeed who I felt was not a true friend because they only saw me or heard from me when I was doing well. I never wanted to complain or be a downer. I only wanted to be like everyone else.

That was not very fair to those people because I have no idea the reaction I would have gotten if I told everyone individually what was going on. I had a good friend who I unfriended only because I didn’t want his brother on my friends list. This guy was someone who knew I had an ostomy previously, knew I had a kock pouch, and when I went to the Jersey Shore with friends and was doing very badly, he noticed. It felt good to have someone there who I could talk to… somewhat. I was embarrassed and never shared any real details (like stool leaking from the kock pouch) but at least it was someone there who I could have probably told the full truth to.

When my grandfather passed away very late December of 2012, this guy saw something on my brother’s facebook page and even messaged me saying how sorry he was for our loss.

It was then that I thought about the cliche break up line “it’s not you, its me” because in this case…to 90percent of those people that I did unfriend or cut out… it WAS JUST ME.

I am sorry.

It was just part of my process.

But I do feel badly and apologize greatly if I have hurt anyone in the process of me trying to deal with everything I have been through.

Fast forward a little bit to early September. My ex boyfriend and current friend was leaving the country on September 3rd, 2012. That morning I broke down to my dad about everything I was feeling, and then proceeded to sit at my computer and not get up until I wrote everything out.

For some reason, him leaving was a sign that everyone was moving on and the only way I would ever be able to move on with my life was if I shared what I had been through with the world. The only way I would be able to have a fulfilling life was if I was willing to open myself up and be vulnerable to pretty much anyone who I came across. I had to be able to just BE THE REAL ME, and see what happened.

greatest quote!!

greatest quote!!

And that is exactly what I did! :)

Stay tuned tomorrow when I re-post my story.

  • Sherri

    You are so amazing and I am so proud to be your Mom and GF….<3….this blog touched me so….how much you have been through…and how inherently strong you are. I bet there will be so many people who will open up too because of how cathartic is has been for you…and that is so, so wonderful…!

    • http://risaroo86.wordpress.com Marisa Lauren

      <3

  • val0525

    So glad you did!! You’ve come a long way, girl!

    Just look at you now.

    • http://risaroo86.wordpress.com Marisa Lauren

      Thank you for the support val!!