A 12-Year-Old’s Perspective on Living With Food Allergies

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When Jason was just 13 months, Allie and I discovered that he was allergic to peanuts, tree nuts and seeds. It’s been a long (and at times frightening) journey, but our little guy’s certainly come a long way. Now that he’s 12, Jason always carries an EpiPen around and has learned to speak up at restaurants and with his teachers about his severe food allergies. If you know him, you know that speaking up is sometimes pretty hard for him. I asked Jason to share some of his thoughts with my readers here at Mommy’s Busy, Go Ask Daddy.

It sucks having food allergies.

If I eat the wrong thing, I could die. And that scares me.  I try to read the labels of all the food I eat and I carry my EpiPen with me at all times, but I still need to constantly stay alert and look out for myself. This isn’t just annoying; it’s my life I could be risking.

Normally I don’t like to think about dying at all. It just really scares me. But my fear gets 10 times worse knowing that I can die just because I ate something I’m allergic to.

What is it like for me living with these food allergies? There’s a lot I can’t do.

At school…

  • I can’t eat anything a teacher gives out.
  • I will only eat the food my mom gives me.
  • When there are parties or other food related activities, my mom has to check everything.
  • I even have to ask my teachers not to drink hazelnut coffee when they grade my papers so I don’t have a reaction.
  • I sometimes sit at a different lunch table from my friends because they have peanut butter and jelly sandwiches or something else with nuts in it.

When I go out…

  • I have to inform waiters about my food allergies.
  • I need to check the soap in any public bathrooms since they could have nuts (or shea butter)  as ingredients.
  • My mom has to train my friends’ parents in the EpiPen when I go over to their house for the first time.
  • I have to bring my own soap and shampoo with me on vacations.
  • I feel scared and unsafe at baseball games with all those peanut shells around. It’s too bad, because I really love watching the Yankees play!

The future…

  • College scares me because I will have to take care of my food allergies all by myself. I won’t have my mom or dad watching over me at all.
  • I haven’t even thought about dating and my first kiss.

Thankfully, I’ve never had to use my EpiPen.  If I ever do have a life-threatening reaction, though, I can only hope I’ll be able to use it on myself. It’s easy to practice using it properly when I’m thinking clearly, but I don’t know what will happen if I’m having trouble breathing and start to panic.

These allergies are something I have to live with for my entire life.  Every day  I am learning to be more and more aware.  I know I need to advocate for myself because it is my life.  My parents are trying to push me to speak up for myself and my allergies.  Since I don’t really like to talk too much anyways, speaking up isn’t such an easy thing to do.

In a few months, I will be having my Bar Mitzvah.  For my Bar Mitzvah project I have chosen to work with food allergies. I’m hoping to raise money and awareness for Food Allergy Research and Education (FARE).  This great organization is trying to find a cure for food allergies and help people with food allergies like me live happier and safer lives.  If you would like to donate, please visit my Team FARE website.  Any amount, no matter how small, would mean so much to me. Thank you!

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Visit Jason’s Team FARE page to make a donation today

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29 Responses
  • CB
    May 27, 2016

    Chin up kiddo! You are a smart boy with a full and wonderful life ahead of you. You sound like an older version of my son. Keep using lemons to make lemonade! Maybe you will go into medicine and help find a cure. Whatever you do, keep enjoying life.

  • Kathleen S
    March 7, 2016

    Hi Jason,
    You have such an inspiring story! I think it’s wonderful that you want to raise awareness and money for FARE and food allergies – way to go, and thank you for what you do! I work with Enjoy Life Foods and I shared your story with the rest of the team. We would love to donate some products for your bar mitzvah. 🙂 We love seeing young advocates like you make a difference and want to encourage you every step of the way. Please email me and let me know your mailing address and the number of people attending so we can donate!
    Best,
    Kathleen

  • Allyson Becker
    February 27, 2016

    I am so sorry that he has this struggle. My heart feels for him.

  • Elva Roberts
    February 26, 2016

    Thank you, Jason, for telling us just how important it is to your life to avoid nuts of any kind. It must be very difficult for you when you don’t really know what is in foods that are not prepared by your Mom.
    You have reminded us of how precious Life is and how necessary it is for others to honor your allergies and avoid putting anything in your way that could be so life-threatening to your health.
    Thank you for telling us about some of your difficulties that you have and making us aware this this allergy is not to be taken lightly. It is, indeed, a matter of life and death.

    • Jason
      March 6, 2016

      Thank you

  • Jennifer
    February 25, 2016

    I am a mom of a 13 year young lady who has lived with peanut and tree nut allergies all of her life. By the time she could speak, she was able to tell anyone what she could not have, with a lot of spunk, too!

    Staying safe and being a self advocate for her wellbeing has been a difficult road as she has grown older. It can be so hard to speak up and proclaim yourself different than your peers, mostly going into your teen years. The way others can treat you (aka bullying, both adults and peers) during these years can hit a young person hard. Through the years there has been lot of frustration at times, but she has grown to look at it in a different light: God makes us all differently unique for a reason. This allergy has made her more aware of what she eats and she eats healthier than many young people her age….not all of that processed food. She is yet another young person who is now interested in helping others with allergy issues, in her future. Through speaking up and being a strong voice to help others understand her needs, my daughter has gained respect for her strength and being able to stand firm in what is best for her wellbeing.

    Kuddos to this young man for beginning to speak up. Also, for turning his situation into an avenue to help others in the future!

    • Jason
      March 6, 2016

      Thank you for your comment

  • Shannon
    February 25, 2016

    Bravo, Jason! You are doing a brave thing and I commend you. My 3yo daughter has multiple FA’s and I hope that as she grows up she will be able to manage as you have and continue to do. Your story gives me a lot of hope for her!

    Best of luck with your bar mitzvah project.

    • Jason
      March 6, 2016

      Thank you ans I wish your daughter good luck

  • Anna
    February 25, 2016

    I’m in college with the same allergies as you (minus the seeds and add shellfish). While I totally relate to everything you said and I have had many of the same thoughts and experiences, it helps me to think of the positives, and yes there are some.

    1) The confidence you gain from always having to speak up for yourself. It’s a lot harder when you’re younger, but the more you do it the easier it gets to explain your needs and make sure that you are getting what you need to feel safe. It’s okay to walk out of a restaurant if you don’t feel safe eating, even if you’re with friends and don’t want to annoy them. Eating at that restaurant might be their choice, but not risking your life is your choice and trumps their preference any day.. This confidence translates into other parts of life and I have learned to articulate myself more clearly and I feel much more confident than my peers when it comes to public speaking.

    2) Learning to be aware of others needs, even if it isn’t related to allergies. We want people to be considerate of our allergies and I think that helps us be considerate of other people and what they need.

    3) Being able to teach people how to keep you and others safe. I LOVE seeing the concept of cross contamination “click” with someone I’m explaining it to. It makes me feel safe and lets me know that others will now be safer as well. Again, it translates into other parts of life and I tend to be good at explaining things to classmates in different ways than the teacher so they understand better.

    4) Knowledge about food. I swear by now I should know everything about food. Everyone loves food and it’s always nice to impress someone by knowing that marzipan is made with almond paste or that pesto contains pine nuts. Even if we don’t always know what it tastes like, that knowledge is a great help

    5) Creativity! I used to be allergic to dairy as well, so cereal with orange juice and mashed potatoes with apple juice were the norm in my house. While these might sound pretty strange, it is what we have to do to eat food that other consider staples. I can’t tell you how many fake peanut butters I have tried and experimented with (Have you tried the one made with peas?) just to be able to understand why people think PB&J is so great.

    It is very easy to spend time dwelling on the negatives of food allergies, and I have. But it’s important to take a step back and see the silver lining. The saying is usually “What doesn’t kill you makes you stronger” but in this case, “What DOES kill you, also makes you stronger”

    • Jason
      March 6, 2016

      Thank you for your kindness

  • Monika
    February 25, 2016

    Thank you for sharing:) This article helped me to a lot ..I can better understand the situation of my son. He is only 5 years… Food allergy, EpiPen (already used 2 times)

  • Katherine Aronson-Ensign
    February 25, 2016

    Jason, I too have a severe peanut and tree nut allergy. I learned how to read, reading labels on store bought items. It takes courage to speak up at restaurants, to your friends and teachers, but as you said it truly is a matter of life and death. Keep your head up; it gets easier with time and increasingly the public is more aware of severe allergies. My only suggestion is to check out this monthly shot called Xolair. I started receiving this injection my sophomore year of college because my peanut allergy had become so bad that I couldn’t be around the smell. I had to wear a mask during my classes and on airplanes. There are safety issues that come with taking this shot, but I can say with confidence that it has saved my life and sanity. Continue to educate those around you and keep those close to you who support you no matter what.

    • Jason
      March 6, 2016

      Thank you

  • Shannon
    February 25, 2016

    Coming from someone who has Anaphylaxis and is now in college (almost done) and about to get married – It’s all possible! It may be a little more difficult, but it will all happen for you. I’ve had to use quite a few epi-pens in my time, but I have lived a full life so far and am happy. 🙂

    • Jason
      March 6, 2016

      Thanks

  • Alysha
    February 24, 2016

    My daughter 12 has a severe life threatening allergy to dairy, that inc casein, whey … And is also allergic to beef. On pizza day in school intake her out bc the smell of melted cheese can trigger a reaction … Same here re shampoo, soaps etc… Your Son is a hero to speak so honestly, Mazal Tov on hos upcoming Bar Mitzvah …. Love the project.

    • Jason
      March 6, 2016

      Thank you and good luck to your daughter

  • Fabgrandma
    February 23, 2016

    I am not allergic to anything but I have to be careful about eating wheat or anything with gluten in it. I just get sick for a day or too, but it’s not life threatening. It is hard to always have to be on the look out for certain things in your food.

    • Jason
      March 6, 2016

      Thanks

  • Maggie Brier
    February 23, 2016

    People think my 14 year old daughter is crazy to check soap or ask our manicurist not to use almond smelling hot water, but she is, like your son, self protective. I worry about high school next year, when everyone can go out to lunch every day…

    • Jason
      March 6, 2016

      Good luck to your daughter

  • Michelle Sale
    February 23, 2016

    I am so proud of how honest, realistic, and prepared you are to deal with a very challenging circumstance. Your writing is clear and concise, and I wish you all the best!

    • Jason
      March 6, 2016

      Thank you

  • loucheryl
    February 22, 2016

    My sister has a peanut allergy. Even if she smells peanuts, her throat starts to get scratchy and tightens. So scary!

    • Andrew Kardon
      February 22, 2016

      It really is so scary! Thankfully Jason can smell peanuts okay so far. That’s awful your sister just smells them. She has to be careful just walking past those roasting nuts carts I always see in the city!

  • Cami v
    February 22, 2016

    I didn’t realize there was so much that could cause a reaction such as soap. Good to know. My son has a kid in his class that has a food allergy and I know it can be hard. I will remember these for future reference.

    • Andrew Kardon
      February 22, 2016

      Thanks, Cami. That’s all anyone can ask for is to just be aware!

    • Jason
      March 6, 2016

      Thank you

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