But, You Look So Normal!

Updated: Jun 21, 2019

by Megan Marsiglio

I’m always talking about how open I am about my Crohn’s and IBS, but the other day I wasn’t. I was embarrassed, uncomfortable and afraid I would be judged. It just made me realize we need to stir up more conversation and more awareness about digestive issues to get to a point where we can comfortably say something to a stranger when we need to.

So, here it goes…

The other day I was at client’s office for a meeting and we went out for lunch. I got a salad, not thinking about what was in the dressing. Half an hour after lunch, I realized there must have been gluten in that dressing…because my stomach was writhing in pain. I’ve been gluten free for 10 years and I still forget sometimes to ask “is that gluten free?”

The pain hit right before we sat down for a four-hour meeting. Before the meeting began, I excused myself to go to the bathroom. I was in there for quite some time – thanks to the gluten. Realizing I was gone longer than a “quick trip to pee” I made an excuse when I arrived back that I had got lost on the floor (which was believable because it’s like a maze). If I hadn’t made up an excuse I felt like I was going to be judged. I hadn’t got lost though…I knew exactly where I was…I was just so embarrassed that I had spent close to 10 minutes on the toilet. Part of me wished that I could have just said I was experiencing a flare-up because I accidentally ate gluten, but unfortunately disclosing that type of information to someone you’ve just met can come across as TMI and perhaps make them feel uncomfortable (which is so unfortunate). It’s too bad that it’s TMI, because if I had a broken foot, which would have had me walking slow from the bathroom back to the meeting, I would have just said “sorry I took so long, I’m not very fast these days with my crutches!” No one would have been uncomfortable and it wouldn’t have been TMI.

With a broken foot, I probably could have even asked for an extra chair to put my leg up on. I may have even asked if I could have iced my foot mid-way through the meeting. I would have done whatever I could to make sure I was comfortable for the next four hours. It wouldn’t have been awkward…because everyone would understand. With a painful stomach that had me wondering if I was going to have to run back to the bathroom, I really would have loved to sit though that meeting with a heating pack and my legs tucked up…but I couldn’t, because nobody knew how I was feeling…and if I asked, it could have made things awkward…because not everyone understands.

The next day I was back at the office for a second meeting (I was feeling much better). During lunch, we ironically started talking about food and allergies. I mentioned I was allergic to gluten and was asked how sensitive I was. I shared that a crumb could set me off and then I shared that I had been “glutened” the day prior. I was asked how it affected me and if I felt sick during our meeting. I didn’t lie, I told them I had been in the worst pain. They were shocked that I had been feeling sick. The response I got was “but you looked so normal!” It’s true, I did look normal. My cheeks were rosy from my blush, my eyelashes fresh with mascara. I had nicely ironed clothes on and my hair was curled. I looked absolutely normal. But I felt the opposite. My stomach was gurgling with pain, I was nauseous and I was afraid I’d have to run back to the bathroom for another 10 minutes.

Most of the time people with digestive disorders don’t say anything – like me the other day. It made me realize I need to speak up more when I’m not feeling well. I’m always saying “who cares what other people think” but the other day I totally forgot that. I wish I had just given a little disclaimer to the people I was with and told them I was going to go for tea refills throughout the meeting to help calm my stomach. But I didn’t do that. I sat holding my breath, with one of my pant buttons secretly undone and checking the clock every so often to see how much longer I had to sit on that wooden chair.

If I had had a broken foot during that meeting, it might have been uncomfortable, but I would have done what I had to do to get through that meeting. I only wish I could have had that approach with my stomach the other day.

When something isn’t talked about, there is a lack of awareness and understanding. And with lack of understanding comes judgement. We need to work together to break that judgement by increasing awareness.

The more experiences and stories we share, the more awareness and understanding we’ll create. My hope with this story is that I’ll be able to reach someone else to share theirs. Do you have a similar experience you’d like to share? Let us know!

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