We've all heard the dinner table rules. Don't talk about religion. Don't talk about politics.
I'm adding a new one to the list: Don't talk about my diarrhea.
I have celiac disease, a serious genetic autoimmune disease. That means I can't eat gluten - ever. Gluten is a protein that's found in wheat, barley and rye. Naturally, my dietary needs come up immediately in a restaurant scenario. It's nearly impossible to order a gluten-free meal and ask a ton of questions about ingredients and preparation practices without anyone noticing.
My family and friends are used to me explaining my needs by now. But, when I dine with new people who don't know much about celiac disease, they are naturally curious about why I am eating gluten-free. The conversation always turns to the inevitable question: What happens if you eat gluten?
Like many of the 3 million other Americans with celiac disease, I am hit with a raft of symptoms that yes, includes diarrhea. When the peppering of questions starts, I find myself wishing I were invisible. My disease becomes the topic of discussion and I am the center of attention - and not the good kind of attention. The kind of attention that makes you feel like a specimen, looked over and examined by curious minds.
It's not that I mind talking about celiac disease. I am an advocate, after all. There are certain times though, when I don't want to be defined by my disease, like when I'm meeting new people and in a public place like a restaurant. When people do ask me that inevitable question, I get the sense that they know I have something (gross) to say.
So please stop asking me about my diarrhea and other painful symptoms. Ask me instead about the reason you've never heard of celiac disease or met someone with it (it's underdiagnosed, so you probably have). Ask me why the needs of celiac disease patients are minimized ("it's just a fad"). Ask about how to properly prepare foods for someone with celiac disease (it's more difficult than you think). Ask how celiac disease impacts my daily life.
Until the questions I receive about my celiac disease at the dinner table change, I'm just going to give the answers that no one is asking about. Celiac disease means that my body fights itself and refuses to absorb nutrients. It means that when I eat gluten, I have debilitating migraines that prevent me from doing much of anything. It means that my skin burns and my joints ache for days.
When people ask for the gory details of how gluten affects my body, they ignore and contribute to the invisibility of celiac disease. The symptoms and damage done to our bodies from eating gluten isn't always obvious from the outside. We don't always "look sick," and our dietary needs are the subject of the latest fad diet, making people think we're trying to lose weight or latch on to the hottest celebrity diet. We're often viewed as fakers or picky eaters. It's in these situations that we not only want to be invisible, but when we are invisible. People don't see us. Just our (medically-necessary) diet.
Living with an invisible illness extends well beyond the restaurant. It takes most people with celiac disease six to 10 years to get an accurate diagnosis. By the time we get our prescription of a gluten-free diet, we've often been brushed off, told that our symptoms are in our heads, or that we "look fine." That wears on a person after a while.
Eventually, people with celiac disease can get tired of the questioning, tired of always having to fight for others to understand us. Sometimes, it's easier to make ourselves invisible. Some stop going to parties. Many haven't been to a restaurant in years. Some drop out of college. Others will take risks by eating something questionable and paying the consequences later instead of drawing unwanted attention to themselves and their disease. It's even worse when the decision to remain unseen isn't ours. It's not uncommon for people in the community to stop being invited to events altogether to avoid accommodating their diet.
May is Celiac Awareness Month. In honor of this month and in recognition of all invisible illnesses, our community is asking that you look beyond the surface. See past the gluten-free diet and recognize the person that is living with a serious genetic autoimmune disease. Instead of focusing on the symptoms, take #60ForCeliac and watch a one minute video to see what it's like to actually walk in our shoes. See what's happening beneath the surface, not what's happening in the bathroom.