How to Deal With People Who Don't Understand Celiac Disease

We all are faced with people who just don’t “get it” at times. We all get tired of explaining why we feel sick or why we can’t eat even a little bit of certain foods. And we all get frustrated at times when it feels like nobody understands.

I consider myself a fairly knowledgeable and empathetic person. But I have also been that person who doesn’t get it.

Darkness Visible by William Styron is about his experiences with depression, but there is an excerpt that I feel perfectly explains how we can feel bad and feel sympathy for someone, but not truly understand until something until it personally affects us.

This memory about my relative indifference is important because such indifference demonstrates powerfully the outsider’s inability to grasp the essence of the illness. Camus’s depression and now Romain Gary’s — and certainly Jean’s — were abstract ailments to me, in spite of my sympathy, and I hadn’t an inkling of its true contours or the nature of the pain so many victims experience …

I have a cousin and a friend with Celiac Disease. I have two distinct memories of feeling sympathy but not having any clue about the nature of these people’s pain or the details of their disease. I didn’t know every detail about where gluten hides. I certainly didn’t know that even a miniscule amount of gluten would make them sick. I never baked or cooked for them, but I certainly wouldn’t have thought to use separate utensils and baking dishes. It’s not that I didn’t care, it’s just that I lacked the ability to “grasp the essence of the illness.”

My first memory is from when I visited a friend in Colorado about three years ago. I hadn’t seen her in a few years and she told me she had Celiac Disease. While I had a vague idea what that meant, I didn’t really understand. I knew Celiac Disease meant no gluten but even with all the food allergies I’ve had my entire life, I didn’t really THINK about it. I didn’t think about what she had to give up, or how difficult it must be to discover Celiac Disease at this point in her life. I remember one night, she made grilled cheese sandwiches. Looking back, I have no idea what kind of bread it was, or if it was gluten-free and I really never thought about it again until I myself was diagnosed with Celiac disease.

My second memory is from Christmas of 2011. I knew my cousin had Celiac Disease and I remember my grandmother bringing some gluten-free crackers for him. However, when Christmas 2012 came around, I wanted to bring some dishes for myself and him, because I didn’t think they had many gluten-free things the year prior. Turns out, this past Christmas was almost 100% gluten-free but my lack of knowledge and insight the year before led me to not even pay attention to my cousin’s food options or lack thereof.

So there are two lessons here. The first is to remember that the people who don’t get it, aren’t doing it to be cruel or lack empathy. They are human, and just like all of us, they think the world revolves around them. I don’t mean this as a bad thing; it’s just that rarely do most people bother to look outside of themselves to see what others are going through. This isn’t to say they don’t care because I don’t believe that. I just think we all have a limited capacity for what we think about, what fills our minds, our days and our time. And for most people, that means they think about their own day-to-day life: their trials, their job, their family, their errands, their bills.

The second lesson is to try not to feel self-conscious about how we order at restaurants or what we’re eating or not eating, or that we’re not necessarily the picture of perfect health because again, most people are too absorbed in their own habits and life to notice or care what you’re doing — even if it’s a friend or family member.

It’s hard not to get aggravated when people don’t understand us or when we feel like they’re judging us. I understand the urge to get frustrated, to yell, to lecture, to go on and on about what Celiac Disease is. I understand, because I also want to educate others. But some people will never get it. And just like we want to be understood, we need to try to understand how these other people think. We can all probably think of a time where we’ve judged someone else, or not bothered looking beyond the superficial to really SEE and FEEL what someone else is going through. We’ve all probably listened to someone talk, but not really HEARD them. If we can be compassionate toward the people who don’t necessarily make an effort in “getting” us, we may not change them, but at least we won’t harbor unhealthy anger or resentment. Being angry doesn’t change anything; it only makes us feel like misunderstood victims. And feeling like a victim is not a healthy or happy way to go through life.

How do you handle it when people make insensitive comments? What do you say when someone seems to be clueless, regardless of how often you explain Celiac Disease?

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