Today’s post is about a topic important to me: advocating for yourself with an autoimmune disease. I received a post request on Instagram for this one (hi Megan if you are reading this!) and I’m excited to chat more about the subject. Advocating for yourself with an autoimmune disease isn’t always easy or comfortable, but it is so important. This post focuses on celiac disease, but the general information can be applied to other autoimmune diseases as well.
I wanted to begin this post by sharing a little bit more about my own self-advocacy experience. I was diagnosed with celiac disease in late summer of 2017. At this point in time, gluten free products existed on the market and were available in some restaurants, but the breadth of availability was nowhere near what it is today.
Some of you may know this already, but my diagnosis came the day before I flew to Italy for an exchange semester. This meant that not only would I have to figure out my autoimmune disease while living alone in a foreign country, but I would also have to advocate for myself in Italy, too.
This wasn’t easy. I felt like I was in freshman year of college again. I didn’t know a soul on campus, let alone in a foreign country. Many social gatherings in the first few weeks at my new university were centered around food. And why wouldn’t they be? The food in Italy is incredible and everyone was excited to try local delicacies. I’d meet up with new classmates at the panini shop across from campus or would gather for aperitivo. There weren’t a ton of options that I could eat in either setting.
Apertivo is a northern Italian tradition and is extremely popular in Milan. For 8-10 euros, you can purchase a drink, and with your drink comes access to either a mini-buffet or small plates including meats, cheeses, vegetables, and more. While I loved going to aperitivo for the fun social aspect of it, it was not easy with celiac disease. Aperitivo spots that had the “buffet” theme allowed guests to serve themselves, leading to lots of cross-contamination.
When simply meeting peers for a quick bite at a place where I could safely eat something on the menu, it still wasn’t easy. Sometimes, the only thing I could eat was a salad or appetizer, while my friends enjoyed beautiful pizzas and simple pasta dishes that seemed worthy of Michelin stars. One of many reasons I (and many others) wanted to study abroad in Italy was for the culinary experience. Now, I could no longer partake.
Other times in my first few weeks abroad, I had to speak up and voice my allergies to the waitstaff, who sometimes did not understand me/my disease. The confusion led to further conversations in (very) broken Italian/English which often made me feel like my disease and I were the main topic of conversation. Evidently, this made me feel uncomfortable in groups of new friends who I still did not know very well at the time.
Over time, however, advocating for myself got a lot easier. I still feel uncomfortable from time to time, but I see this as a necessary skill I need to keep building. At the end of the day, there is truly nothing to be embarrassed or uncomfortable about.
Celiac disease is an autoimmune condition and not a choice. Taking care of my health is more important than feeling “weird” when speaking up about my disease. Below are a few tips that have helped me advocate for myself.
Take accountability for your own health.
If you are eating at a restaurant and do not speak up about celiac disease, you run the risk of getting extremely sick. Let’s say you’re browsing a menu and find a meal that appears to be gluten free. The ingredients are all naturally gluten free and everything looks great! Everything should be fine, right?
Unfortunately, no. Soups are often thickened with flour. Soy sauce is used in many dishes and marinades. The food may be cooked on the same pan as gluten-containing items. The list goes on. You can never be too careful in this scenario.
While accidents and mistakes do happen, your health is largely in your hands. I personally believe that it is so much better to voice any concerns and inform the restaurant about your disease. This way, you will minimize the risk of any sickness or internal damage.
Again – mistakes do happen, but I feel much more at ease when I communicate my disease. At the end of the day, if you do not take accountability for your own health, who will?
Ask for substitutes.
Maybe you’re out at a business lunch that does not advertise gluten free options. You can’t bring in your own food to the restaurant, but you need to attend the event. Upon evaluating the menu, it appears that none of the entrees are gluten free.
In this situation, I would strongly recommend utilizing side dishes and/or appetizers to create a meal full of gluten free substitutes. I’ve found that many vegetable dishes in restaurants are gluten free (but please always confirm at the restaurant you are at). These dishes are delicious when combined with other small plates or each other. By doing this, you can still participate in the meal, yet do so safely.
Some entrees at restaurants will have a naturally gluten free main dish (such as seafood) with sides that are not gluten free (e.g. pasta). I would encourage you to do the same thing in this situation – ask for a substitute! Vegetables are a great option, but you can see if the restaurant offers legumes or gluten free carbs as well.
I’ve found that restaurants are generally pretty understanding when it comes to food allergies. If you think of it from their perspective, they definitely do not want to make you sick nor damage their reputation. Definitely inform the waitstaff of your allergy and ask if they can make you a plate of multiple gluten free sides instead.
Inform your friends and family.
This is incredibly important. It is crucial to inform your loved ones so that they can better understand your disease and needs. Below are some great resources that you can leverage when explaining celiac disease; there are a ton of facts and statistics. You can also reach out to your doctor and ask for other celiac resources to share.
Resources:
Celiac Disease Resources for Students and Parents
Keep the conversation going.
I keep the conversation about celiac disease going on my Instagram account. I try to post facts about celiac disease often to inform the broader community and spread celiac awareness.
Offline, I try my best to stay up-to-date with any celiac news and research. There are so many ways you can stay in the loop and educated – a quick Google search will do it. When you continue to educate yourself and learn current facts, I find that it is easier to build confidence in yourself and your celiac knowledge. This, in turn, will make advocating for yourself with celiac disease easier moving forward.
I hope these tips can help you become a better advocate for yourself! With practice and education, it will get easier.
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