Connecting With Fellow IBDers: My First Experience

Does anyone remember or have heard of Jpouch.org?

Well, about fifteen years ago, that was the site that connected me to other people who had Crohn’s Disease or ulcerative colitis (IBD). It was such a slow process of me actually wanting to be on that site, in the chat rooms (yes, I know I am dating myself), and actually sharing vulnerable experiences. I guess because I was using a screen name instead of my real name, it made me feel more comfortable. Especially because I was only 15 years old at the time.

I mentioned above that it was a slow process for me to go on this website. My mom found it and became very involved with other members. She also loved to post questions and since it was all anonymous, she knew I would be okay with it. I was very, very private about anyone knowing the details of my disease for over ten years and thankfully, she respected that.

It first started with just my mom sharing little things here and there that she learned from other people.

I knew she poured through other people’s comments given she is a researcher by nature. When I was diagnosed with ulcerative colitis at the age of 13, no one in my family ever heard of it before. We were at a complete loss which is why my mom clung to this site.

And thank God she did.

After a little while, I would let my mom share with me more in depth about some of the things she learned. Then, as it became more interesting to me and also kind of validated a lot of things I was going through, I would read the things she thought were appropriate for me on my own.

{As a side note, at the urging of my gastroenterologist, my mom took me to an IBD event where they talked about… pretty much everything I never thought about nor wanted to ever happen to me. I was 14 at that time and I remember my mom being dumbfounded that we were even there. She believed she was taking me to a place where I could maybe feel comfortable sharing what I had been through with a couple people. That, in her mind, I believe was my parents jumping off point to attempting to get me to open up and meet other people who suffered from a form of inflammatory bowel disease (IBD). After that event, my mom and I both knew it set me back from doing that which is why I think she seemed okay with doing the research on her own, even though I was the patient.}

Anyway, back to point. I then began wanting to be on this website 24/7.

I started connecting with people in chat rooms, people were responding to my questions on the forums, and it just made me feel like there was a whole world out there of people who could, possibly get it. The problem was that most of them were in their 40’s or older. The issues one faces as a young teenager were very different, to say the least.

My parents even took me to a meet-up in Massachusetts (I am from New York) so I could meet the people I befriended in person. While it was nice to do that, it also made me very upset because I was the youngest person there by about 20 years. It kind of forced the “why me” mentality for a little while.

I did, however, meet two girls who were just a few years older than me on that website. They didn’t attend the meetup I just mentioned. I remember staying up late and talking to one girl in particular for hours on AOL instant messenger (remember that?). Talking to her and knowing I wasn’t alone with my anxiety, my PTSD, my physical pain, my emotional pain, my guilt, my need for control, my frustrations with others not understanding, my self esteem and body image issues, my disordered eating, etc was so helpful. It was truly like I was talking to myself.

Everything she said, I understood with little explanation and vice versa.

I did end up meeting both girls in person which was really nice. However, even if you befriend someone on the other side of the world where meeting in person isn’t really an option, sometimes it can be exactly what you need.

There are a lot of quotes out there (I am a quote junkie!) about how people come into your life for a reason and I do believe that. Even if the friendship doesn’t last or something else occurs, that person was meant to fill a void. At least, that has been my experience. I needed to have those long conversations, regardless if it was just through a computer. I needed to see that I wasn’t alone with all of the emotional things I mentioned above. I needed to feel validated. I also needed advice, at times, from someone who understood what my life was really like as opposed to just another physician or therapist.

Opening up about my experiences, sharing vulnerable things, and pretty much coming to an acceptance of who I am has been and still is an evolutionary process. However, when I look back on my journey, I realize how much those people helped me. I did what I felt comfortable with on my own time…with some gentle nudging from my mom and dad.

Where are you in your journey?

I know we go back and forth sometimes between sharing and retreating/withdrawing but are you somehow who feels comfortable opening up about your IBD? Or, do you not feel like you can be open about what goes on with your body and mind? Has there been anything that has helped you begin the process of slowly starting to share more about your disease? If you are at a place of acceptance, how long did it take you and did connecting with others play a role in it at all?

I would love to hear more about YOUR experiences in the comment section below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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