Does anyone else wish there was a happy medium between

• having your condition be the topic of every social gathering and
• people forgetting you have a lifelong condition and saying, “but you look fine!”

Yeah, me too.

As celiacs, social situations often feel like a paradox where we either encounter unwanted visibility or the effects of living with an invisible illness.

Unwanted Visibility

The first is the case of unwanted visibility, where far more hubbub is created about celiac than we’d like, whether it be at a restaurant or a social gathering. This can include people asking us what exactly happens after we eat gluten or scrutinizing everything on our plate. Or it could be a long string of conversations that we have to have with servers, chefs, and managers to make sure the food we’re eating at a restaurant is safe.

While we are often happy to educate others and answer questions, no one really enjoys having their disease be the main topic of conversation at every meal.

A diagnosis shouldn’t define us, but it can be challenging to remember this in situations where everyone is guffawing over all the things we can’t eat, asking us how it’s possible to not eat bread, and making sure we know that they would die if they couldn’t eat pizza ever again.

Invisibility

We’ve all had experiences where, at the same time that we’re politely advocating for ourselves, we’re told we “look fine.”

The effects of gluten are not as immediate or external as an allergic reaction. Therefore, some people are unable to fathom the fact that a crumb of gluten can lead to the aftermath of an immune system gone rogue: bloating, diarrhea or constipation, aching joints, headaches, heavy fatigue, and the works, which can last for days, weeks, and sometimes even months following gluten exposure.

Unfortunately, this mindset often leads to the “a little bit won’t hurt you” and “just relax” comments. In these situations, we may end up feeling that we have to convince people we even have a condition.

Yet, we also soon find out that it’s impossible to control what everyone thinks or says about us all the time.

What helps

Beyond finding ways to let some of it go, here are a few things that can help navigate this:

• working on our own self-advocacy and confidence in these situations
• reaffirming our self-worth
• remembering that we are the only ones in our bodies and the sole protectors of our health
• building a network of people who have our backs and can commiserate when the going gets tough. This includes other gluten-free folks who can empathize, family and friends who will never truly understand but will try their darnedest to, and a healthcare team who ought to recognize celiac as an important part of our story.

Having celiac has given me so much compassion for others with chronic diseases, as we constantly find ourselves in a dance between unwanted visibility and invisibility. How have you experienced this in your life?