Be A Food Allergy Advocate

Be A Food Allergy Advocate

One of the first things you learn about food allergies is that there is a lot of misunderstanding and misconception about food allergies. From your friends and family to some of your healthcare providers, the more you learn, the more you’ll find yourself educating others in how to best support your family. 

Yes, that can be frustrating. You’re trying to get your own footing. You’re trying to keep yourself or your loved one safe, and now you’ve got to add correcting misinformation and advocating to your to-do list. Here’s the good news: you’re not alone. There are others in the midst of the same sets of conversations you find yourself in and collectively we’re dispelling myths and making things safer for families like ours. However, there is a right and wrong way to approach these conversations.

Be Informed

It’s counterproductive to dispel misinformation with more misinformation. Yes, you want to correct inaccuracies that put you or your allergic loved one at risk. Correcting that misinformation with your own misunderstanding, however, creates its own set of problems. It calls your credibility into question, which in turn, can mean those you correct dismiss your comments. It can create resistance. It can misrepresent the experience of other allergic families and their needs in a way that puts them at risk. 

The best way you can advocate for yourself and your family is to equip yourself with accurate information. Talk to your allergist. Follow reputable sources like FARE, FAACT, and others. Research and stay informed on current recommendations. 

Be Calm 

Getting your facts straight is step one. Being able to share those facts in a calm and rational way is equally important. Yes, it can be hard to keep emotion out of our response when someone’s mistake puts someone you care for at risk of a severe reaction. From mistakes that raise the risk of a severe reaction or a dismissive comment, we can feel the anger and fear rise. Take a deep breath. You can be angry and not respond in anger. You can be afraid and not respond in fear. Keep your tone level and your response rooted in fact. 

Be Research-Based

The parent bringing snacks to your child’s soccer practice is trying to assure your daughter that it’s okay to take one of the packages she’s being offered because, “There are no peanuts in there.” Your child, however, recognizes that product as one she avoids because it bears a cross-contamination warning for her allergens and tells him such. He dismisses her comment with some remark about legalese and again holds out the package. It’s frustrating to think this scenario would occur, and yet, it’s fairly common. 

We might be sharing accurate information, but some folks need to hear it from someone other than us. Being able to reference research or even your own allergist can bring the point home in a way sometimes our own statements can’t. 

Try this instead: “Thank you for offering. Unfortunately, my allergist advises me to avoid packaging with cross-contamination labels like that. The research is that products with such labels can contain enough of the listed allergies to trigger a reaction in an allergic person like me. It may be a small risk, but it’s not one I’m comfortable taking. I’m happy with the snack we brought from home, though.” 

Be Selective

When your well-meaning aunt is trying to tell you that her friend’s neighbor’s niece was cured of her food allergies by taking some concoction her co-worker’s mother-in-law read about online, she means well. The information isn’t accurate, as there is, after all, currently no cure for food allergies. It may not be the right time, however, to launch into a full discourse debating the merits of her story. 

It’s okay, sometimes, to respond to comments like this with a simple, “Interesting. That’s the first I’ve heard of something like this. I’ll have to look for some research on the approach and maybe talk to our allergist.” It’s subtle, but you’ve made the point.

Be Firm and Confident

You’ve done your research. You know your allergy management plan. You are partnered with a board-certified allergist you trust. You continue to read and keep up with current research. You live with this day in and day out. You know your stuff and what you don’t know, you trust your doctor to tell you. Be confident and firm when pushing back on bad advice or recommendations. 

You can be respectful and still be firm. If you know the advice your general practitioner or your child’s pediatrician is offering is not in line with what your allergist has instructed or the latest research you’ve read, advocate for yourself or your child. If your child’s school is disputing a request during discussions about accommodations, push back with facts and research and hold firm to what you need, even while being flexible in what you can do without.

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