Why words matter even more with IBD

Last updated: May 2018

As I write this, I am delicately sipping disgusting colonoscopy prep. It's been a beast of a day. I've cried. I've vomited. I've spent hours in the bathroom. It hasn't been pretty, folks. Amidst all this, I texted my friend "happy birthday." We exchanged a few texts and I let him know I was going through colonoscopy prep.

"I feel like all you ever do is suffer."

His response, "I feel like all you ever do is suffer." I know he didn't mean those words maliciously. I know he wasn't trying to hurt my feelings or making me feel poorly. But, it really made me pause and reflect. I pride myself on sharing my patient journey with Crohn's disease in a positive, transparent and honest way. My hope is to inspire others, whether they have IBD or not. Those words made me question whether I'm communicating in a way where others who are healthy see me as sickly and suffering?

Yes, we suffer with inflammatory bowel disease, but we all put on a front so much of the time. I don't show people the half of what goes on...and they think THAT'S suffering?! I know we can't hold everyone accountable for being educated about IBD, that's why it's so important we all share our stories and do our best to educate and spread awareness to those around us.

He went on to think colonoscopy was surgery and that I'd feel better after it...so it just goes to show I need to work more on educating my family members and friends. It's a difficult balance because so many of my friends never even ask or show interest. It feels weird and almost awkward to bring up my health to those who know I have Crohn's but don't seem to think it impacts my life in any way.

As I started my prep, the mother of a girl named Madison who is now 12, but has battled indeterminate colitis since she was three, texted me to say her daughter has gone in the chapel at her school every day this week to pray for me. Such a stark difference. Because she gets it. That little girl has more maturity and understanding of IBD because it's been her reality since she was a toddler. She had to endure the prep as a three year old.

It's crazy how that beautiful act of compassion was overshadowed by a haphazard comment about suffering... that was probably sent as a way of being sympathetic, but was off the mark. It's so easy to focus on the negative, but we can all thrive if we choose to focus on the positive. The people who are there through feel good days and bad. I find when someone is there for me during a flare up I never forget it. If someone even reaches out, it leaves a lasting impression. You remember those acts of kindness.

Words have power

Words have power. With invisible, chronic illness we never know the battles people are dealing with so it's imperative we watch our words and shield our hearts from negativity.

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