Life with Crohn's | Part 6: Coming to Terms

"When I was diagnosed, I didn't think it was going to be a big deal. I was given medications and was told they would work. However, that wasn't my case. It ended up becoming much more significant in my life, and I was spending every month getting an infusion in the hospital."

-Kathleen Baker, Olympic Swimmer

Those could have been words straight out of my mouth. When I was diagnosed, I had never heard of Crohn's before, and really didn't think it was a big deal. I kept my diagnosis mostly to myself, not for any other reason than I had no idea how it would come to impact my life. Since I was diagnosed in college, the only people who knew were my parents and my swim coach. Eventually, I told my roommates, but only because I needed them to drive me to appointments and tests - even then, it didn't seem like a big deal.

Kevin (then my boyfriend, now my husband) was the first non-family, non-roommate, non-swim coach who I told. I remember the scene as if from a movie - we were at Downtown Disney in LA, off to have some fun adventures. My phone alarm went off at 2pm, reminding me to take my medication. This had happened a number of times before when we were together, but on this particular occasion, Kevin asked why I had to take the massive blue pills in my hand. My response? As if it was no big deal, "Oh, I have Crohn's disease." Kevin: "Like Kurt Kobain?" Me: "Uh, I don't know, I guess so?"

The first time I told someone about my disease more out of necessity than family ties or friendship was right before going on a 12-week tour of the West Coast with Liberty in North Korea. I was to live out of a 15-passenger van with two other people, sleeping on floors, in spare beds, and sometimes even in the van. I figured the people I was traveling with should know that I had Crohn's, even though it never really impacted my day-to-day at the time.

The day finally came when I was to tell my team - I was so nervous, I thought I might cry. I tried not to make a big deal out of it, because I didn't know what to expect from their reactions. I finally just came right out and said it: "I thought you should probably know that I have Crohn's disease." I don't remember much of the conversation, but I do remember everyone being very supportive, asking questions, but not too many questions ("What is Crohn's?" "How will we know if you are struggling with it?")

Luckily, nothing major happened while I was on the road, though after we got back and I started working in the office full-time, I had my first hospitalization. 

The more I told people that I had Crohn's, the more comfortable I was with the diagnosis. Every time I talk about it, people are very understanding, and nearly every time, their response is something like "Oh, my <so-and-so> has Crohn's!" or "Tell me more, what is it, how does it affect you, and how can we support you?" I know that Crohn's can strike it's ugly head at any time, so it is important to keep the people I interact with up-to-speed, so that I'm not suddenly in the hospital one day and no one understands why.

I know that Crohn's disease will always be a part of me (pending a cure), but I can't let it keep me down. I only have control over a few things, including my attitude and mental game. Some days it's hard to stay positive, especially when I'm in a lot of pain or when I'm stuck in the bathroom (or both!). To keep me going, I always look for the bright side, or use some serious sarcasm to help break through (an especially effective tactic during procedures & tests). 

Two years ago, in 2016, I finally joined a group of amazing people training for endurance events (marathons, triathlons, bike races, etc.). I knew about Team Challenge since around the time it was started in 2008 by the Crohn's & Colitis Foundation, but never worked up the courage to join in the fun before that. After my first week with the San Diego team, I realized what I had been missing - a group of people who understood what I was going through and who were trying to make a difference  for the 1.6 million other IBD patients - by fundraising for a cure and to for improving the quality of life for those diagnosed with IBD, such as hosting support groups.

After 10 years of having the title of "Crohnie," I am finally at a point where I can openly talk about my experience: where I have been, and where I hope to be in the future (with a cure!). It has not been an easy journey, but I am grateful that it has brought me my Team Challenge family, and some "exciting" stories of  💩 and hospitalization.

Help others come to terms with their diagnosis!

It takes time, but also a strong support network like that provided by the Crohn's & Colitis Foundation and Team Challenge. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here. 

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Stay tuned for Part 7: Living Life & Managing Flares