When most people find out that I have Crohn’s Disease, they generally offer me their condolences for what I must be going through. Undoubtedly, living with a chronic illness is not easy; I sit through infusions, give myself shots, take pills, watch what I eat, decline indulging in favorite foods of the past, and generally go above and beyond to take excellent care of myself. Scopes, imaging, and countless procedures are the norm in my schedule, and my insurance bills are truly something to marvel at.
But Crohn’s neither defines my life, nor who I am. In fact, most people don’t find out that I have Crohn’s until long after they have met me, and when they do, it just is what it is. You see, I have Crohn’s, but Crohn’s does not have me.
I was diagnosed at age 13, a month to the day after September 11th (8th grade was a fun year). In the time since, I have fluctuated over 40 pounds of steroid weight gain and flare weight loss. I have eaten some of the blandest diets imaginable, and even done the good ol’ “Ensure” diet. There are times when I must watch what I eat, and times when I can have fun.
But Crohn’s never dictates how I live my life. It sometimes informs the choices that I make, but I like to think of them as compromises. Like any good relationship, we all make sacrifices for each others happiness, right? But before we know it, we realize that those compromises aren’t really sacrifices at all!
I mean, oh no! I have to eat granola and carrots and slow-churned (light) ice cream? Twist my arm!
Oh, no! I can only have a few fries rather than the entire serving? And I can only drink every now and then? Probably for the best.
Oh, no! I have to workout and take care of myself? Well, I would do that anyway. By the way, I run marathons.
And I have Crohn’s. How’s that for being defined by your body?
If you asked me to define myself, I would say that I am a runner, blogger, foodie, loud mouthed Southern girl with an international world view and blond hair with a mind of its own who is (often) too smart for her own good. A woman who loves vegetables, light ice cream, and small-batch companies who work their heart out.
Crohn’s is part of my life, like a glut of workout clothes in a riot of colors and the need to foam roll. And SO MANY bags of granola.
Though I do not suggest allowing a “fact of life” to define who you are, defining what the problem is can actually be a blessing. I have a few posts on my blog dealing with coming to terms with diagnosis, difficult days, and gaining the support of your friends and family, but here are some of the biggest takeaways:
- Decide that you will not be a victim. Right now. Make the decision that this is something to deal with, but that it is not going to define who you are or your plans for your life. Live by your own terms
- Find something to motivate you, to be the draw into the future. For me, at the time that I was diagnosed, it was horses and my mom. I got out of bed every day to go to school because if I could do that, I could go see my horse and spend time with my mom.
- Laugh. You have to have a sense of humor. And, if you have a condition that is affected by your stress and hormone levels, laughter actually truly might be the best medicine.
- Know that your diagnosis affects more than just you. It affects everyone around you, everyone that loves you. But I also add that you 100% deserve their support. You are still you!
And sometimes? Those things that you have loved can come back to your life. Read about my reintegration of certain foods into my diet here.
Find what works for you and know that what works is likely to change. A moratorium on exercise may only be necessary for a little while until inflammation calms down. Same with food. My high fiber diet is basically the antithesis of the “typical” Crohn’s diet, but it is what works for me, at this moment.
My biggest piece of advice would be to take things back to basics with regards to food and lifestyle and then to work on building back up. Master alternative baking staples. Get in the kitchen, find new ways to create old favorites.
I make a fantastic gluten free chicken parmesan that even my husband adores. How about Chipotle Turkey Cranberry Pumpkin Enchiladas for your Thanksgiving table? Or faux Pad Thai and Nam Sod? Or PANCAKES and CAKE?!
I don’t know if I ever would have become a marathoner or a foodie without Crohn’s…nor would I have been likely to start a blog, which has given me so, so much to be thankful for…plus, where would I have met other people as crazy as I am?.
Bottom line? Modify, substitute, but never settle.
ABOUT THE AUTHOR
Learn more about Susie and her Suzlyfe and read her story!