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Advocacy Comes in Many Shapes and Sizes

My name is Shae. I have a life-threatening allergy to dairy, and I have had several anaphylactic reactions. When people ask me how long I have been an advocate for food allergies, I seem to always give the same answer, “a few months,” but I guess that’s not entirely true. I guess the truth is, I’ve been an advocate my entire life, but I just didn’t know it. My family has been fighting for food allergy awareness and a cure for food allergies as far back as I can remember. It’s always been a big part of my life, so I never really felt like it was an option not to advocate. I would love to say that I first understood advocacy when I started school, but I didn’t. However, I do remember my mom volunteering to be a room mom so that she could ensure that classroom parties were safe for me. I remember my dad doing a few presentations about food allergies for parents at my school’s PTA meetings. I also remember when my parents took me to my first Walk for Food Allergies. I was only three years old at the time and don’t have a ton of memories from that day, but I do remember my parents telling me that every family there was just like us, and it felt really great to meet other kids who are just like me. We continued to attend our local Walk for food allergies for a few more years. My parents even volunteered to help with the event. I even remember a newspaper reporter who came to interview some of the families who were involved in the planning for the food allergy event. To see myself in the newspaper was really cool. I have a lot of great memories throughout my life of my family working hard to make everyone and anyone aware of food allergies.

I’ve come to realize that advocacy comes in all forms. You may be advocating even when you don’t know you are doing it. If you are explaining your allergy to staff at a restaurant, you are an advocate. If you are explaining your food allergy to your classmates, you are an advocate. Advocacy comes in all shapes and sizes.

I think the first time I really considered myself as an advocate was when I attended the FARE Conference in 2019. I was in awe of all the families there and how they all seemed to share the same experiences with food allergies as my family has. I loved attending all the workshops and feeling a sense of camaraderie with other teens just like me. I was always the only kid in my class with a food allergy, so meeting people like me with food allergies was life-changing.

Shortly after the conference, I began preparing for my middle school’s science fair. I decided to do my science fair project on the importance of handwashing and avoiding cross-contact with food allergies. The school is K-8, and I had so much fun conducting my experiment with each class by using glitter on one person’s hand and then having them shake hands with others and seeing how far food allergens can spread. It was truly eye-opening to see how many kids did not know how to wash their hands properly. I was also surprised at how little the judges knew about food allergies but how interested they were in learning about it. I earned first place for my science fair project and an award at the State of Connecticut Science Fair.

After the science fair, I received an email about FARE’s TAG program. Little did I know that joining TAG would be the beginning of an amazing journey as a food allergy advocate. Last summer, I was given the opportunity to write a blog post for the FARE website about Back to School with food allergies. It was such a great experience, and it was so well received by my school and social media. My local newspaper even published an article about it.

From there, I built my website/blog about my experiences with food allergies. I then started an Instagram account dedicated to food allergies. I am so incredibly grateful for the connections I have made since then. I have met so many families who I admire for their amazing work. I’ve also been given so many opportunities to write blogs for other advocate’s pages and to share my story. I’ve met incredibly brave people from all over the United States, Canada, UK, and beyond who work tirelessly to tell their stories and to raise food allergy awareness. I am so thankful for the MANY organizations that were created to help spread important information about food allergies, especially the families who used their tragic experiences to help others.

I hope others realize whether it’s blogging, attending food allergy walks, or even talking with friends, parents, or schools; advocacy comes in all forms. The important part is doing what makes you feel comfortable. I hope to continue on my journey to raise food allergy awareness and one day see a cure. Thanks to @justallergythings for the opportunity to share my story.

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