A few weeks back, I was asked to speak on a patient panel at the CCFA’s Los Angeles Education Conference. I attended my first conference in 2011 as a newly stitched up patient, fresh from the surgical table. I learned a lot about treatment options, new research on the horizon, and met people going through the same health issues as me for the first time. When I was asked to participate this year, I was excited at the prospect of paying it forward and being a part of an event that has been so beneficial me in the past.
The original plan was to go early and stay late for the other speakers, but sleeping in won out after a late night with friends and some less-than-wise eating decisions (for anyone else, eating a caprese salad would be healthy, not harmful!) I also left after my group was done to meet friends for lunch.
I had a great conversation with the moderator and another panelist about our diets before we spoke in front of the audience. All three of us eat very differently. One person is on a liquid diet with minimal solid food, the other eats fairly normally but adjusts when in a flare. They were really receptive to hearing about my elimination diet, and asked me a lot of really great questions. I decided not to dive too deeply into diet on the actual panel because it’s a sensitive subject in the community. Getting back to basics and sticking to a primarily paleo diet has helped me immensely, but different bodies require different fuel, so not everyone is going to have success with the same plan and I would never want to push my diet on anyone else. I will say, that I do think it’s worth a try for anyone who is dealing with GI problems, no matter how severe (or anyone just trying to be healthier!), but make sure you have the resources (food and money-wise), support (from family and friends who will cook with you and hold you accountable), and self-motivation (you can do it!) to give the diet a real go and dedicate at least three months to eating clean. It takes time to see results, and I’d hate for anyone to write off an option because it wasn’t given 100% effort. But I digress…
For the actual panel, there were four of us patients who answered questions moderated by a woman who runs an IBD support group in The Valley. We all introduced ourselves, briefly explained our experience with crohn’s and/or colitis, and what we are doing to help control the disease (meds, diet, etc.). We were all different ages, races, backgrounds, and I loved hearing how different each person’s journey has been. There’s something so reassuring seeing other IBD patients living their lives while dealing with what I’ll call a daily nuisance, at the very least.
When it was my turn to address the crowd, I was totally calm and collected while sitting at the front of the hall. I am used to speaking and performing in front of large groups of people, although the 200 pairs of eyes staring back at me belonged to a slightly larger group than I’m used to entertaining. But it wasn’t until I actually spoke into the microphone that my heart started racing and I got suddenly sweaty. Was it… stage fright?! I talked to a friend who said it was likely a reaction to hearing my voice through the speakers. I can’t remember the last time I actually had to use a microphone, so I think that may in fact be the culprit.
Despite the sudden and unexpected heart palpitations, speaking about crohn’s was actually a lot of fun. I got to shamelessly promote Camp Oasis and how much being a counselor there has improved my life, a little bit about using diet to take control of my symptoms, and just general info about what I do when I’m not feeling well: laze around, watch The Office, go for a walk in Griffith Park, have a good cry, etc.
I saw a couple of friendly faces in the audience, a camper from Oasis this summer, and met the mother of one of my fellow counselors! I also spoke with a woman who has a daughter in high school and is nervous about the prospect of her moving away and living on her own. I talked to her a little bit about my experience being diagnosed at the beginning of my junior year while living a couple thousand miles away from my family, and recommended Camp Oasis as a great trial run for living on your own and dealing with IBD in a supportive environment :)
Thanks to the CCFA for asking me to participate. Being a part of this supportive community has been a strange sort of perk for having such an unglamorous condition.