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Everyday Courage: A Conversation with Maya About Living with Food Allergies


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Meet Maya

Today, we’re talking with Maya, a young advocate who lives with food allergies. Through her story, we hope to highlight not only the challenges but also the resilience, strength, and community that come with navigating life with food allergies.


Can you tell us a little about yourself and your family? Where are you from?


Maya: I am from the Bronx, in NYC. But I am puerto rican. I have three brothers and currently stay with both parents. My mother and one of my brothers both have allergies to food as well, showing that allergies can very much be genetically passed.


What do you like to do for fun? Do you have any hobbies or activities you enjoy?


Maya: For fun I enjoy doing spontaneous things such as working at a random camp or volunteering at a random library or deciding to buy a new guitar to learn how to play ( just to stop and move on to a new hobby) I really enjoy being active so I try to make it my duty to always either take walks trips outside or join sport based programs or groups like track or a badminton team or going up to random people on  the beach and playing volleyball with them.

How old are you, and when were you first diagnosed with food allergies?


Maya : I’m 19 years old and I was diagnosed with my food allergies when I was a baby I have been allergic to peanuts since the day I was born, but as I got older, I suddenly started developing other allergies. They might not be as intense as my peanut allergy, but they are still present in my life and I do need to take caution for those as well as I have experienced firsthand that allergies can grow and intensify


What are your allergies, and how do they affect your daily life?


Maya: My main allergy is peanuts and peanut nuts. I used to be allergic to eggs and fish, but as I got older, I overcame those allergies but along with getting rid of allergies, I gained more. One being soy the other being peas, chickpeas, soy beans, basically anything in the legume family. but I do find it strange that there are certain goons legumes that I do eat on a daily date like pinto beans, or red kidney beans and apparently from bloodwork I am able to eat walnuts ( i do not plan on testing that out anytime soon) . having these allergies, but having certain exceptions in the same allergy, family is very anxiety inducing, and very confusing when it comes to buying groceries or eating out, it becomes very restrictive in my mind where I assume I can’t eat a certain food because I can’t eat it’s relative food family. And then there are other times where I do not have enough care to bother and eat the food and nothing occurs.


My allergies confuse me in the way that I can eat chinese food, or snacks that have soy but soy is also one of the second highest allergies I have. This contradiction really takes a toll on my mental health when it comes to deciding if I want to continue taking the risk. There are times where I pray and ask why I was born with so many variations of allergies and pray for the feeling of eating without having any mini panic attacks thinking my tongue is swelling. The placebo effect is real when you really think you're dying one second and then reality checks yourself when I see myself in the mirror and my face is perfectly fine. Reading label tags constantly and when they’re no tags doing a quick google search to check if I can eat the singular cookie a brand has to offer is exhausting and it is my daily life. Being cautious, while having underlying feelings of fear and frustration.


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How does your family support you when it comes to your allergies?

Maya: My family has been one of my biggest advocates, even though we joke around and make fun of my and my brother's allergy. There has always been a sense of understanding and caution. Whenever peanuts are used in the house it is away from any other item, dishes used with allergens are never mixed with others and so on. It is an unspoken rule that I truly respect and admire from my family. Also having a mother who has allergies we are comforted knowing she has enjoyed so many types of foods in life to tell us not to worry about what we’re missing out on but instead learning on what we can create and indulge in.


How do you manage your social life with friends and family?


Maya: A few years ago I believed having these allergies was so embarrassing. I was surrounded by kids who shared each other's lunches and grew up to be surrounded by teenagers who called my allergies, “childish” . It was exhausting at one point explaining to a friend that even though this product they want me to try doesn’t have my allergies, the snack that they picked up was in the same casing as a snack that did have my allergy. Meaning cross contamination was also a danger to my life. It came to a point where I started to hate who I was, I stopped hanging with friends knowing we would eventually have to stop to get food. But during covid, I went through heavy stages of eating disorders and finally got proper help for this anxiety that drove me to countless sleepless nights. I got therapy and built connections with friends who understood my feelings and made it validated. Hating myself wasn’t fair when I am blessed to be in a position of life, and although a simple nut can threaten that I came to trust my resources around me. My friends, parents, chefs, labels, epipens and more. Yes eating is restrictive in a way I wish it wasn't but I have such a strong support team. An example would be a  time I ate a peanut butter cookie, my friend who also ate that cookie took one smell of it and immediately grabbed my hand and rushed me to the nurse. I was saved before my body even showed any signs of reactions and that was from a strong bond I made with that girl and opening up to her about my allergies.


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Tell us about how do you navigate school with your food allergies?


Maya: School life growing up gradually got better as time went on. In middle school I never truly cared what I was eating until I had a reaction and by the end of middle school that was when my anxiety started. But i am so grateful to choose a high school where the lunch man was the most understanding when it came to allergies. Whenever lunch was made and I couldn’t eat it, there was always an extra pizza or grilled cheese (those were my favorite) waiting for me and other students to take. He always told us what seasonings he used in the food and what he planned on making the following day to prepare us. I felt the most comfort eating in that cafe then I did in any restaurant I've ever been to. Getting to know the chef and tiger students with allergies built a solid community.  The example I shared with my friend saving me after I ate a peanut butter cookie took place in school. When I was rushed into the nurses office, She wasted no time grabbing my epi pen and bringing me to the principal's office where it was secluded from other students who may be watching. She successfully gave me the epi pen and stood by waiting for the ambulance. The process was very fast and quick and the only worry I had then was the pain from the needle in my leg.


How do you manage your food allergies when hanging out with friends, going to parties, playing sports, or attending events?”


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Maya: I can say it can be very difficult to be more aware of your allergies at a public event where so much is going on and being moved around. Usually in moments like those I take comfort in snacks or items that are close in packagings, not able to be tampered with or touched. If it's a simple hangout I make sure to eat as much as I can prior to it, so if I do decide I don’t want to take a risk eating the food they’re offering I am not starving. And times where I am genuinely hungry but don’t feel comfortable eating what my friends or family are eating I take it upon myself to find food that I am comfortable eating and separate myself from them to get it. I learned your friends or family won’t mind as long as they know you are eating, being cautious will never be a nuisance. The most difficult part is the want to be included, when there’s a delicious food being passed around to share it’s amazing taste and its unique texture and you have to decline. Having to share your allergies to a big group of people at once would be so embarrassing because now there’s a conversation on how “I have zero allergies” “I feel bad for people allergic to-“ . It does get very repetitive but for some reason it never gets old, it hits the same as it did the first time but I did find ways to cope. And that being even if i’m allergic to a certain food, the foods I can eat also have such various different styles,  flavors, and combinations that I can explore with no worries. Not everything is meant for everyone and my allergies are just not currently meant for me.


Have you ever needed to use your epinephrine auto-injector or go to the hospital for a reaction, and what was that experience like?


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Maya: I have recently been put in a situation where I needed to use 3 epinephrine auto injectors. I was at a sleepaway camp that was an hour away from a hospital. The things I experienced that day was like no other. For starters I didn’t start showing a reaction until an hour after dinner, my heart felt heavy and i could feel the beats more clearly, my ears felt so hot, then came the shortness of breath. I immediately knew something was wrong and when i checked my face in my camera my face was entirely red and hot. By the time I ran to the infirmary my symptoms got 10x worse, not only was my entire face swelled up but it had moved all the way down to my arms. I remember asking the nurses if I was going to be okay after the first epi pen but they were doing too much to answer. My mind became hyper focused on everyone around me. The one nurse reading out loud the times I got injected by the epipens, , the other nurse trying to find my blood pressure but it was too low to find, the other nurse trying to distract me asking me questions. At that moment I felt the most intense fear of my life, I felt my throat closing, I felt my heart beating extremely fast and I remember just staring at my arms. They were both red and swollen, “why are my arms swollen too?” I remember asking even though I knew the answer.


In my head I remember being so mad at myself “of course this is happening to me” along with prayers to God and a cry for help. But I didn’t cry once as my body was still in too much of a shut down mode to process any proper emotions. After the third epi pen my blood pressure still wasn’t found and i was on a mattress dazed out, I had an oxygen mask to help me breathe but it honestly made me feel more claustrophobic then anything. My consciousness was slipping away and I felt weakness in my body that I've never felt before. That was until the strong urge to vomit finally appeared. I knew right then and there that I was going to live. I got rid of whatever my body was rejecting and the ambulance finally arrived. But it wasn’t over yet, the adrenaline from three epi pens and the extreme pressure in my gut and throat from vomiting only made for a painful ride.



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My body was shaking so much the pressure caused intense pain in my lower abdomen, that was when i started crying and squirming out in pain. In the end, I ended up peeing around a liter of liquid. and after my entire body stopped shaking and my vitals were back to stable all that occurred in my head was pure shock and disbelief at what just happened. I needed three epi pens to help my body eject whatever was in it, my throat almost completely shut and my consciousness slowly fading to dark. I almost died, if i had waited any second or minute longer to run to the infirmary from the woods in the camp, I wouldn’t have made it, if there weren’t three epi pens ready at hand I would've died. (none of them were mine as I didn’t bring any epi pens to camp with me) As I layed in the hospital bed, hooked up to the IV. I cried realizing this moment was what my anxiety was here for. I realized my biggest fear just came true at a moment where I felt no anxiety and comfort. Even after this experience there is still fear within me that i’ll have to experience such pain again

 

What advice would you give to other kids, teens, or parents about living with and managing food allergies?


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Maya: Being allergic to food is not something to be embarrassed of, but interested in. Instead of thinking I wish I could eat this peanut butter cookie, I now wonder what are some ways I can make a similar snack within my safe foods that can replicate the texture or smell or taste that that cookie might have. I take this opportunity to create new dishes, like making a soy free soy sauce for a homemade chinese dish I made. It allows creativity and for me to become more open minded. After everything i have experienced up till now, I understand the fear some may have when it comes to allergies, or the mental health issues that can follow, as I am still on that healing journey. But just like how I won’t let this take control over how I live, you should also not let food determine how you decide to live as well. Being cautious is important, everyone has something in their life they need to be wary and careful about. In this world full of people you are never alone, there is always a community to have experienced the same things you are going through.


I’ve meet people with food allergies but they were never scared of food like how I was, I haven’t found that community of people who have gone through and shared their experiences with fear and mental health involving allergies which is why I decided to share my story and how I have lived up till now. To my younger self I would say food was never meant to hurt you, people are so unique in the way we are made and the way I was made turned out to have a poison. But this poison does not determine my life and do not let it. Let yourself understand what your body needs and doesn’t and create a life out of that. Advice to anyone who may going to something similar, you are not alone and you are safe. Day by day new studies are done on allergies and more projects and tests, we are not forgotten or alone. The more we understand our body the better we can treat it. As of now, building a community of people you trust and can support you is the best thing you can do. Always be cautious but never let fear rule over you. To parents raising a kid with food allergies, do not make it seem like your kid is out of the ordinary, support is everything to a kid when it’s coming from their parent, and when none is given a kid will seek support from other things that may not be so good for them. educate them on their allergy and move forward from there.


What final thoughts would you like to share about living with food allergies?


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Maya: It is not spoken about enough, the relationship between food allergies and their impact on mental health. I will continue to advocate for this connection and let others’ voices be heard through mine. I know I am not alone when it comes to these fears, and allergies are often overlooked by those who do not live with them. As someone managing several allergies, I understand firsthand how deeply they affect mental health, and I will not stop speaking about it until it gains the recognition it deserves.



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