I know this post is a little late but I needed time to reflect back and process some of my thoughts on how I spent World IBD Day this year. So, while we are still in the final day of May, I thought I would take this opportunity to share some of them with you. For World IBD Day, I attended the Intense Intestine Foundation’s second annual Climb for Crohn’s and Colitis event.
To be honest, I felt absolutely ridiculous tweeting and posting pictures of me and other people rock climbing with captions such as “having an awesome time spreading awareness for Crohns Disease and Ulcerative Colitis!”
So much so actually that when I got home that night, I deleted some of the pictures off of my twitter account . It was driving me truly crazy to think that there were people in the hospital and really going through awful things and I was at a climbing gym.
When I was going through so much and would search the internet for support, I would be inundated with sites and blogs of people claiming to be able to do anything with IBD if they just believed in themselves (or something along those lines.) I remembered brushing past countless things that filled my eyes with tears and made me feel like there was something wrong with me because I wasn’t able to just get myself out of the hospital or out of bed to run team challenge or participate in any of these other things that so many IBD patients seemed to be able to do. It made me feel even more isolated and just so alone.
When I started this blog and set out to be a part of the activist world, my goal was to make sure that no one ever felt the pain I did when I was going through so much and felt like there wasn’t another human being who I could relate to. So when I came across my friend Sara’s video one day last year and saw her talk about how she experiences *gasp* some anxiety because of her illness, it made me realize that there was a chance that other people were experiencing some of the same emotions that I was. And it was because of this girl who shows the world what REAL people go through that I have had the strength to be a more open person. It is because of the real stories that are out there, with real people showing real emotions that I have had courage to continue on every day.
It is for this reason that World IBD Day this year did not sit well with me. I felt like it became a social event and as someone who has been affected by IBD since the age of 13, and in every single aspect of my life, I couldn’t bear the thought of being an activist potentially giving off the impression that I was minimizing what people endure with Crohns disease and ulcerative colitis.
But upon further reflection, I realized that one of the true meanings of these events are to bring people together. It is about creating a safe, fun environment where people can just be themselves and hopefully foster new friendships and relationships with other people going through similar experiences. And that is exactly what this event did.
Everyone of the girls in the picture with me suffers from IBD and was struggling during this event. It was one of their first ever IBD events and first time connecting with other people whom she could relate to. Two of these girls are currently on biologics, while all have either been on or are currently in the process of trying to decide whether that course of treatment is right for them. Two have had their large intestines removed. One has an ostomy. One has a Jpouch. One is even in the hospital as I am writing this!
This weekend was very eye opening for me for a lot of reasons. Last year at this time, I came to this event and it was my first ever IBD event and now a year later I was there in a whole different capacity. It was an amazing feeling but also extremely emotional at the same time. I am trying to find my place in not only the world but in the advocacy world as well. I have been having a difficult time finding a balance between wanting to show people that they can do anything and “overcome” IBD (for lack of better, more appropriate wording) but also want to be someone that people can relate to.
I find myself learning new things constantly but even in these past couple of weeks I have come to a lot of new realizations. I am still trying to sort through some of them now but I did want to say that if it wasn’t for these events, I wouldn’t be the person I am today. I know the reasons why some things don’t sit well with me and I do know that I tend to over-think but I also know that when I look back on a lot of the things that have been life changing for me in terms of my personal growth, this event last year was my jumping off point. It allowed me to acknowledge that I belonged at an IBD event and it gave me the chance to start making connections. It also just gave me some confidence that I desperately needed in order to take it a step further and take part in a weekend event which I will be expanding on next week. And if it wasn’t for that event and me connecting with so many wonderful people in that community, who knows what I would be doing right now?!
It has taken me since that Saturday, May 18th, to come to some of these conclusions. The best thing to have ever happened to me was meeting fellow IBDers and none of that ever would have happened if I didn’t take the first step and come out to an IBD event. The comraderie and sense of community that goes along with doing something positive with a group of people who understand all you’ve been through or are currently struggling with is incredibly powerful and gives you a sense of security and comfort that can’t really be explained in words.