Patient Education Day: Speaking from the heart

Inspirational. Resilient. Strong. Those are the first three words that come to mind when I think of the Crohn’s and Colitis community. This past weekend I had the opportunity to attend and speak at a Crohn’s and Colitis Foundation Patient Education day event in St. Louis. Sitting in a roomful of patients, doctors and caretakers—surrounded by a group of people who “get it”. A group of people who share the same struggles, triumphs and life experiences.

There’s something to be said for making connections with this close-knit community face to face, rather than over the internet or social media. We laugh together, we shed some tears together, we meet people who are complete strangers who in a matter of hours feel like close friends.

In the days leading up to the event I had drafted a speech—all about preparing for a family with Crohn’s, pregnancy and motherhood. It was a busy week, so I never had a chance to look it over. In the minutes before I took the stage I kept going back and forth in my mind about whether I wanted to bring up my speech and hold the papers in my hands or just speak off the cuff.

I brought the papers up and as soon as the microphone was handed to me, I looked out the in the crowd and saw several young kids and teenagers. In that split second, I decided my speech should be motivational for them. I talked about how Crohn’s and ulcerative colitis enable us to have incredible perspective about life. I shared details about my experience being diagnosed and how I didn’t allow my disease to rob me of my dream of being a news anchor. I talked about the importance of caretakers and having the superpowers to see which family members and friends step up to the plate when you need them the most, and which fade to the background.

Most importantly, I spoke from the heart. If you’ve battled inflammatory bowel disease for any amount of time you have a story. Your story has the power to lift up others and show them they are not alone. It’s so easy to isolate ourselves and pretend that we’re feeling fantastic, when in all actuality our insides are inflamed and constantly leaving us in pain. As I looked out in the crowd, wearing a dress, standing tall with my hair curled—looking like a completely healthy person. I said—little would you know looking at me, that this morning at 2 a.m. I was stuck in the bathroom in excruciating pain, on the brink of throwing up. Those are the moments nobody sees, that we need to talk about.

As I looked out in the crowd I saw so many people nodding, so many people crying. I talked about how my husband Bobby has been there with me every step of the way since we met in 2013. Explaining his daily efforts to make sure I am ‘ok’. I saw tears in his eyes as I shared our story. After the speech I was approached by patients, parents and doctors. I was told countless times how my genuine and heart-felt words meant so much. Each of the conversations I had made me feel overwhelmed with joy. It was such a special day and such a special experience for my family. On the way to the event, I talked with my husband about how I wish I didn’t suffer in silence for over nine years and wish I would have shared my story from the start.

I don’t want you to have the same regrets as me. I know it’s easy to hide behind your invisible illness and think people will judge you, pity you and look at your differently. But what I’ve come to find out is that it’s the complete opposite. You will feel so empowered by sharing your story and you will quickly find out how strong and incredible the IBD family truly is.

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