IBD is a Process, We Are All At Different Steps
IBD, as with any chronic illness, involves a process. Diagnosis doesn’t come with a one way ticket to activism, confidence, and openness. As we are all very familiar with, a diagnosis of Crohns or Colitis often involves confusion, embarrassment, and a complicated cocktail of emotions for which we are likely unprepared. No matter what disease you have, whether it’s chronic, terminal, or just plain painful, hearing the words “You have [insert condition]” really means, your life will never, ever be the same.
Coming to terms with an IBD diagnosis involves stages similar to those of the grieving process- denial, anger, bargaining, depression, and acceptance. To complicate things, our diseases have an element of taboo- symptoms that others do not seem to want to hear about, things we don’t want to admit to ourselves, and experiences with things like colonoscopies and enemas. Throughout our journeys, we may think we’ve conquered these stages, only to be set back by an unexpected flare or even a lasting memory of the pain- physical or emotional. At the end of the day, we’re all taking this journey, and we’re all at some point along it, and we’ve all got to be here to help each other.
Support is Sometimes the Best Treatment
One of the most underrated treatments for IBD is building a support system around yourself. This is likely a mix of your significant other, family, and maybe a few close friends that aren’t deterred by the nature of your disease. But another important part is just having others in your life that simply “get it”, because they’ve been through a very similar experience. Somehow, although it may have no medical or physiological benefit, having someone respond to your descriptions of life with IBD with understanding and acceptance can make all the difference in the world. That is one of the best side effects of being a part of a GYGIG ride weekend, after all of the fundraising, training, and volunteering, we come to a place that we know we have support.
I believe it is our responsibility to others and to the IBD community to take what others have given us in the form of support, a listening ear, or as a role model, and pass it on to others who are still struggling with this. I remember being sick during college, and being so desperate for someone that would just sit and listen to my frustrations, or understand that I was too tired to go out, and just hang out and watch movies. To just be, and let me know that it’s OK to have IBD. After many years, I feel like I have found that, and I’m honored to have the chance to provide this to someone else. We all know how valuable these seemingly little things can be, and that they can truly change a life. They provide little stepping stones for others along our path to IBD acceptance.
An Embarrassing Disease, but an Experience to be Proud Of
A striking comment I heard on Ride Weekend was that the hardest part about having IBD is trying to hide it. This comment caught me off guard, and also stuck with me. It’s been a long time since I thought of my disease like that, but yes, years ago, I too felt I had to hide it. But as I began to get more involved and see others dealing confidently with the same disease and the same experience as me, and as I started to open up and tell others about what it is like to live with IBD, and how I was being proactive about it, I got a little closer to acceptance. I am forever indebted to those who went through that process before me, and were present in my life to become a role model, whether they knew it or not. It is vitally important.
The thing is, yes, Crohn’s and Colitis are embarrassing diseases. Many people don’t understand the urgency, the pain, the fatigue, and the things we see in the toilet. They might not want to hear about your surgery and your resulting ostomy. After all, we learn at a very young age how to “hold it” and use the toilet, and that poop is dirty.
We didn’t choose to get these diseases. Likely, surgery was not a choice either. But what we can choose is to do something about it. We have an experience to be proud of, whether it is becoming active in the community, raising money for research, and even participating in GYGIG. But sometimes, it’s simply making it through day-to-day, finding the positive in your experience, and just getting through a life that is probably tougher than many others’ lives. This, for me, is a big step to acceptance and openness about IBD. Even if you are embarrassed about your disease, you can be proud of your experience.
Throughout ride weekend, I was reminded of this precious concept again. We are all there to mark different points of our journey. We are all there to inspire each other. We build a special, positive, and unconditionally supportive community. I’ve seen people with ostomies be impressed at those with colons completing the ride. I’ve seen “intestinally normal” people be impressed with the level of activity that ostomates can handle. I’ve seen people in remission be inspired by those who are still fighting symptoms, yet still out there riding or volunteering to make the weekend happen.
We all go through the same process. We are all here to remind each other what it’s like to be at a different point in the journey, whether it’s the confidence and openness, inspiring others that yes, there is hope and yes, you will get here, or the ones not as far on the journey, reminding us where we came from, and what we went through to find the confidence that we now possess. And we all help each other through it. Our community works together to get everyone to the acceptance stage of IBD, where we can spread the goodness and pass it onto others. We can collectively take that attitude and become role models to others outside the IBD world, and show them how strong and successful we can be, despite IBD. And that is something I wouldn’t trade the world for. We are all here to inspire each other.