Demi’s Story

My nut allergy was discovered at 2 years old, after my face started swelling from eating pistachio ice cream. In the years to come, I was diagnosed with a peanut and tree nut allergy, alongside asthma, eczema, and other non-food related allergies.

Growing up, I struggled to accept that my body didn’t work the way I wanted it to. My allergies, asthma, and eczema made me feel different from everybody else. I was so frustrated with my inability to eat what I wanted. I even tried to prove that I wasn’t allergic to nuts and purposefully ate a spoonful of peanut butter (spoiler alert: I was still allergic).

Not wanting to accept that I live with an allergy led me to not taking it seriously. I used to never carry an epipen, not thinking much of it. If I felt a reaction coming on, I would downplay it as no big deal. I was careless in what I ate, not asking questions or reading labels. Looking back at it, it feels miraculous that I have avoided a fatal reaction with how many times I’ve eaten nuts by mistake. I always felt my allergy was a burden, and it was my burden to carry alone. It felt embarrassing to speak up for myself and advocate for my needs. I internalized a lot of shame over the years.

As I grew older, I slowly realized just how severe my allergies were. When I was 17 years old, an allergic reaction to a spring roll that had peanuts in it sent me to the hospital. I remember being surrounded by doctors and nurses as they put an IV into my arm while my mother sat beside me. It was one of the only times I can remember thinking to myself, “I could die from this.”

The past few years I have been diligent in changing my lifestyle to properly accommodate for my allergies. I no longer eat packaged foods that “may contain” nuts or are processed in the same facility. I look at this this way: I wouldn’t eat anything that said “may contain poison”, so why would I risk eating something that may contain my allergen?

I carry two epipens with me at all times. I am persistent with telling people about my allergy and reminding them when necessary. Every time I go out to eat, I tell servers about my allergy and insist they tell the kitchen. I triple check labels. I began setting boundaries for my safety by asking the people I’m with to not eat nuts around me. My household is now a nut free house. These are things that were never established as habits while growing up, and it isn’t easy to stick to them.

Sometimes I am tempted to just eat something that says it was processed in a facility that processes nuts, because I slip into thinking,“Well, what are the chances?” I still find myself losing my confidence when ordering food, feeling shy to mention my allergy because I am so used to getting uncomfortable looks after asking. I’ll still take a bite of something even if I’m unsure of what’s in it, because my first instinct is for some reason to ignore my intuition when I get a bad feeling that something may have nuts in it.

I wish I knew all I do about allergies now back then. It’s taken me almost 20 years to unlearn and relearn how to approach my allergies. It makes me wish that food allergy education was more prominent in our society. I am seeking out more information about food allergies in order to be as educated as I can. Being well informed about how allergies is an essential tool that helps me navigate living with them.

The other way I keep myself safe has been through changing my own attitudes. Besides information, the attitudes around food allergies are what I really struggle to change. I grew up thinking my allergies were a burden. I felt responsible for my allergies and would feel guilt or shame whenever I did end up having a reaction. It was embarrassing to have to bring attention to myself over my allergies. Now, I am making sure my voice is heard in order to protect my health, and I hope I can inspire other people to speak up.

I launched FFA because I strongly believe food allergy awareness is life-saving. It is so much more than just knowing the facts, it’s about changed behaviors that can prevent a fatal allergic reaction. While there is no cure for allergies, there is so much more everyone can be doing to prevent allergic reactions. Self advocacy is super important, but people do not have to manage their allergies alone. Everyone, no matter whether they have food allergies or not, can help create a safer world.