Hiding behind a smile while living with IBD

Hiding behind a smile while living with IBD

Last updated: October 2019

For more than 13 years, IBD has been a part of my identity. I was diagnosed with Crohn's disease in July 2005, at age 21. Since that time, I have used a smile more than I'd like to admit to hide my pain from the disease. In my eyes, that's the "perk" of an invisible illness. You can choose to share how you're feeling, when you want to. Not because you have to. But, because you want your health to be part of the conversation. Unless someone knows me very well, when they see my happy disposition and cheery demeanor, the last thing they probably think is that I'm not feeling well on the inside.

I thought I had people fooled

Until this past week. I was in my prenatal yoga class. I started going a few months ago, so my instructor doesn't know me that well. As I enter the third trimester, the pregnancy has brought on a great deal of sciatica pain in my lower back, to the point where I can barely walk by the end of the day. To paint a picture for you, at the end of the day, I can't get off the couch on my own. My husband has to bend over and has me wrap my arms around his neck so he can lift me up.

My "sunshiny" disposition

At my most recent class, there were several yoga poses I was struggling to do. I was in extreme pain, but was laughing so hard, I was crying. It was my way of making light of the debilitating pain. At the end of class, the instructor said she had never seen this bad of a case of sciatica. She went on to say that she could tell that I try and mask the pain with my "sunshiny" disposition. She was right.

Those words made me think. While my sciatica has nothing to do with my Crohn's, the chronic pain I've been dealing with and how I choose to present myself to others, is the same. Have I had people "fooled" with my IBD pain or are they too able to discern when I'm putting on a front to protect them from my reality?

Why do we hide?

That comment from the perceptive yoga instructor also got me thinking about the why. Why do so many of us with IBD feel the need to hide behind a smile and keep our pain internal? If we choose to take on the pain alone, no one can help us. If we choose to suffer in silence, we will grow resentful and timid. We will continually isolate ourselves from our friends and family. It was a reminder to me about the importance of being your own best advocate. By vocalizing when your disease is giving you a hard time, you're opening yourself up to support and love from those around you.

There's no need to shield our loved ones from the reality of our pain. Taking on IBD isn't something you need to feel alone in. It's ok to take off that mask. It's ok not to smile. It's fine to tell it like it is. Because honestly, unless someone lives with Crohn's or ulcerative colitis, they can only comprehend and try to understand the severity, if it's communicated honestly and openly with them.

Some food for thought as you think about putting that smile on next time, when you don't genuinely mean it.

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