This past weekend I had the chance to connect with a fellow IBDer who had participated in a few of the online chats that my friend Sara and I try to do weekly. It was a really great experience but also a little eye opening in a way for me.
When I started this blog last September, I did it because I had so much bottled up for 12 years and I needed more than anything to just get out everything I was thinking and feeling. I was exhausted from living my life so privately that I found it cathartic to share so much of myself with the world. I was writing so much initially. Sometimes multiple posts a day because it felt so amazing to write and just let everything out for the world to know. I also wanted so desperately to find a way to turn my experiences with IBD into helping others because I know how much it helped me to read other patients stories, struggles, and insights into their life as a patient living with Crohn’s disease or ulcerative colitis.
This blog opened the door for me to surround myself with an amazing support system. When I would write a post about something I was going through, I would then be met with a number of follow up messages either asking how I was doing, offering advice and support, or encouragement based on my words. It was (and still is) empowering. It made me feel like I was really connecting to other people by sharing so much of myself. I had spent such a long time doing everything humanly possible to hide who I was because I was so embarrassed by my disease, that I really felt like my soul was dying in many ways.
The few months after I was diagnosed with ulcerative colitis was when I started journaling. I would write and write constantly. When I was in the hospital and either too weak to write, or I had IVs located in bad places, I would actually dictate some general things that I wanted my mom to jot down for me in my notebook. It was my way of expunging all of the things I was feeling since I couldn’t share what my mind and body were experiencing with anyone other than my parents (and sometimes my brother.)
But, this past weekend made me realize something.
I always admired my friend Sara for being able to put everything out there for the world to see in an effort to help others and show them that they aren’t alone with their struggles. It was one of the things that showed me that my feelings were real and deserved to be validated. However, as this girl who was once just a random voice on the internet started to turn into one of my absolute best friends in the world, I realize just how much of herself she leaves out of her blogs and videos.
When I met my friend this past weekend, I was blown away by how much he know about me. Some of the things that were mentioned I actually forgot about until he brought it up. It was actually very cool in a way to have someone know you so well without having to go through the sometimes long drawn out “get to know you” process, but at the same time, I have no idea who else is reading my work. The person I met this past weekend was a wonderful human being so I am more than happy for him to know everything.
…but it was a jolt to my system about how much other people (who are not so “awesome”, for lack of better wording) might now know about me, my life, my thought processes, etc.
It made me feel vulnerable and a little too exposed for comfort.
So the next day I wrote the post I did about nicotine and its relationship to IBD because it was a general topic that has been on my mind for a while. My mom asked me what sparked this particular post which made me think that it was more like I needed to do “damage control” in a way by talking about something that had absolutely nothing to do with what I was thinking about or currently experiencing right now.
Anyway, this was on my mind today and has been since Saturday. I am not too sure what exactly I am going to change about my writing style (if anything) because I don’t want to lose what I always wanted to do with my advocacy – share my experiences as openly as possible so that others never feel alone the way I did for so many years.