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28 Things People With Food Allergies Wish You Knew

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Recently, a friend of mine shared that her child asked her if she should have a will in case she died from an allergic reaction. At a food-allergy medical conference, a colleague told me last winter that her son asked Santa in a letter for Christmas not to let him die if he accidentally ate a peanut. When I sat on a panel to talk about why food allergy research is needed, another panelist shared a poignant letter from his son saying he was sad he was a burden on his family as they could not eat out at certain restaurants, fly particular airlines, or vacation in certain destinations. I never think of my child as a burden, but it pained me to think he may think of himself in that way, regardless of how often his parents tell him he’s not.

Those who have food allergies do not want to impose on others, but they learn early on that they must speak up to keep themselves safe and alive. Many people don’t comprehend that even ingesting a crumb of the wrong cookie could be fatal. Speaking up for yourself in public — which can be difficult for all of us — becomes essential for even young children with food allergies.

I asked those who live with food allergies to share what they want others to understand about this disease. When you have the opportunity to read the many responses, it gives you a window into the heart of a food-allergic person. For me, reading these comments and watching my own son grow into his teens, the silver lining to a food allergy diagnosis is that our kids grow up to be kind, sensitive, empathetic and strong.

Please help us educate the greater public about the need to respect life-threatening food allergies.

These are 28 things people with food allergies wish people understood:

1. “Food allergy kids, turned adults, are probably some of the most caring and empathic people you will meet. We know what it is like to advocate for our safety daily. We’ve learned to take responsibility since before we knew what that word even meant. We also know what it’s like to feel that we are a burden even though we don’t want to be one. Food allergy adults know how to be grateful because we truly appreciate when others help us eat safely. Sometimes the littlest things to some are the biggest to others. We get that and our eyes are open to others who also need accommodations for things that we may take for granted. Those of us who have grown up with severe food allergies have never been able to walk into a restaurant or bakery and order whatever we want, and to us, that is probably one of the coolest things — the ability to just eat something without having to read any ingredients or ask any questions. We’ve never done that. Because of this, we are more aware of what others may not be able to take for granted. We allergy adults are also resilient and have pushed through all sorts of challenges. However, something that is truly crucial to note is that we can still do anything, but our ‘normal’ is different than yours and everyone wants to feel accepted for that, whether it’s food allergies or something else.” — Allie B.

2. “I wish [others] could understand that I’m not trying to ruin their fun/enjoyment by asking them not to eat my allergen (peanuts) — it’s literally for self-preservation and I prefer to feel safe rather than be extremely anxious about my surroundings.” — Monique P.

3. “An Epi-pen is not a magic potion that saves your life. It only gives you 10-15 minutes to go to the ER.” — Sunhee W.

4. “My 13-year-old son [wants] others to understand he can’t just go out to eat with his friends just anywhere. That everywhere he goes he has to ask questions or read labels. His life literally depends on it. He said he wishes that people would be more understanding of what it all entails to live with food allergies and have to carry life-saving medicine everywhere he goes just in case an accident occurred. He also wishes he didn’t have to live his life in fear of food and that he could eat anything he wanted without potentially dying.” — Erica A.

5. “I am still a person. Yes, I can’t eat your snack, but that doesn’t make me sub-human or inferior. I shouldn’t be constantly told I have no right to live. Allergies can get worse over time, and what you’re eating next to me can actually harm me as my condition is airborne. I am forced to discuss it even if it causes you embarrassment or restrictions as it’s my life at stake. No one chooses to become allergic, and yes, I ate my allergen very regularly as a child/baby so it’s not my parents’ fault. But the positive is how much compassion I have for others and how much I value any accommodations. You changing your loo roll means the world to me. Workmates moving away from me when eating my allergen to allow me to work is worth more than winning the lottery. Your small sacrifice is worth the world to someone like me, so thank you.” — Sarah PL

6. “It’s not my choice to have an allergy and I’d rather not have it. Also, stop [calling me] ‘attention seeking’ when asking people to help accommodate me.” — Julia B.

7. “It’s not ‘natural selection.’ It’s a disability recognized by the ADA. Not everyone has the same experience, so don’t say, ‘Well I know someone allergic and they eat xyz.’ OK? They might be comfortable with shared lines and facilities. I am not. Also, don’t say you’re allergic when you simply don’t like a food.” — Sara M.

8. “I have so many things I can say about [food allergies] which was why I actually wrote a book, ‘Food Allergies: The Ultimate Teen Guide’ (Rowman and Littlefield Publishers). But the biggest things for me (I developed multiple life-threatening allergies as an adult) were the fact that it can create health-related anxiety and it is OK to get professional help when the anxiety interferes with everyday life. Also, as an adult, I’m perfectly fine going out and not eating anything but still socializing. I’m not making the situation weird by not eating so I wish others just carried on as well. I mean a few questions are fine because yes, it’s not the norm to be at a function/restaurant either not eating or bringing my own food, but the focus shouldn’t be on my dietary habits. Also, please don’t tell me yoga, essential oils and going gluten-free are going to cure my allergies. Actually, I don’t have are wheat and dairy allergy. What’s good for me may not be good for someone else.” — Jessica R.

9. “There is no magic pill to take to ‘fix’ food allergies, and [allergies] it is not something anyone wants to have… we simply must avoid the allergens at all cost. Yes, this includes family events, social events, people that have consumed said allergens to name a few.” — Dena P.

10. “My 12-year-old said, ‘I wish people knew all that went into this — how much planning and work living with food allergies takes.’” — Susan K.

11. “My daughter is 8, and last year after an incident at her school we posted a picture of her and this caption: ‘This is Jaya. She’s 7 years old and is allergic to dairy, egg, peanuts and tree nuts. Yesterday she was very sad because a classmate was waving a cheese string to which she is allergic to around her. She asked him to stop and he refused. Jaya approached the adult supervisor who spoke to her classmate. After school Jaya said she wants to go to an ‘allergy school’ to be with other kids like her who understand what it’s like to live with food allergies. #stopfoodallergybullying” — Jyoti P.

12. “If I were to recall all the trials and tribulations, ups and downs, I find that what I want people to understand is that those with food allergies are warriors. We have lived in a time where policy and procedures were not in place to directly protect and find peace for those living with food allergies every day. People with food allergies navigate tremendous adversity and develop life skills that allow them to be mature and contributing members of society. Humble, patient, and compassionate are some of the qualities that exemplify those with food allergies because we had to figure out what it takes to navigate a world that didn’t understand us for something out of our control. Instead of backing down, we persevere and conquer each day with as much grace as we can. That is what I want people to understand. We are warriors every day.” — Zachary C.

13. “Anxiety… constant anxiety and trying to sell the facade that everything is fine.” — Greg H.

14. “Living with food allergies isn’t a choice and not something to joke about. Those of us that have them often feel excluded from certain events, or we might feel guilty instead because special accommodations are made for us. Then there are the times when we feel anxious/afraid because we are in an environment where we have no control of the food and possible cross-contamination. However, I think the worst is when you have people say things to you about your allergies like you made a decision as if you want to have them. Food allergies aren’t a life choice. They haven’t had to sit in the ER on a breathing treatment and IV waiting for an allergic reaction to pass/stop. They don’t have to make sure they have their EpiPen at all times. Only those who live with food allergies actually understand them.” — Crystal G.

15. “As an adult who’s been living with an anaphylactic allergy to tree nuts for over three decades now, I wish people would understand that when you’re traveling (plane, train, bus) you should never eat peanuts or tree nuts on public transportation. These spaces are difficult to clean and even a small amount of nut particles can trigger a life-threatening allergic reaction. You’re going to survive the short term inconvenience of not having your nuts; an allergic person who needs to travel alongside you might not be so lucky. Oh, and I developed my allergy as an adult, so… do keep in mind this is the kind of disability that you or your family member could develop at any time.” — Brenda M.

16. “The food allergy community as a whole is not ‘crazy.’ There are lots of intelligent and compassionate people, but we have our ups and downs, and just as any other community has, we have [all kinds of people].” — Leila M (15 years old)

17. “I feel nervous when I leave my house. If I see peanuts I try to stay away from them and be cautious. But I get anxious.” — Eloise (7.5 years old)

18. “My son has admitted to panic attacks just trying to eat. Although a restaurant may tell him something is safe, you can’t really trust anyone because there are stories of mistakes that have happened. He gets nervous, panics and can’t finish eating.” — Karen B.

19. “Peanut allergy is not the only allergy that can be life-threatening.” — Vicky H.

20. “We are not being dramatic. Food allergies are real and can kill you.” — Lauri D.

21. Because of my food allergy, I cannot drink milk or eat tree nuts. I cannot eat a tiny M&M. My name is not Michael, or Matthew, or Mark. My name is not Simon, or Sally, or Sam. I cannot do a handstand, I cannot play the tuba, I cannot speak Thai… and I could fill this post, and all of my other posts, telling you everything I can’t do, everything I’m not. My name is JJ Vulopas, and I learned a long time ago that while it’s technically correct (and sometimes prudent) to say what I’m not, it’s ridiculous to define myself that way. Food allergies do not define us; we are who we are and who we can be, not who we’re not. It’s vital for educators, family members, and friends of kids with food allergies to acknowledge and encourage all that we can do and all that we are.” — The Land of Can

22. “[Food allergies is] not a ‘kids problem,’ and you don’t just ‘grow out of it.’ It’s real and serious. And yes, airborne reactions are a real thing. I’m not exaggerating or seeking attention. If I was I wouldn’t be carrying two auto-injectors of adrenaline on my hip at all times. Sometimes even doctors don’t take us seriously. I was once scolded by an ER doctor for using my EpiPen ‘too soon’ even though my throat was starting to close up. The ‘sense of impending doom’ symptom is real, and a feeling I wouldn’t wish on anybody. And even with many diet restrictions, you can still have good, enjoyable food.” — Emma B.

23. “As a teenager with food allergies, these are the comments I wish people would not make, no matter how well-meaning they might be: ‘Go on — one bite will not hurt,’ ‘Are you just trying to lose weight or is this just a diet fad?’ Offhand comments like, ‘I would die if I couldn’t have pizza’ or ‘What can you eat?’ are kind of hurtful. I may not be able to have some foods, but I can have food! There is no need to avoid me at lunch or exclude me from parties because you think I won’t be able to have anything. On the other hand, I just wish that people would understand that food allergies are a manageable condition. With planning and a little bit of advanced notice, we can attend almost any social gathering or trips. Having said that, I have encountered several wonderful people who take food allergies very seriously. For example, my friend’s lovely mother who once took the extra trip to pick up the only vegan cupcake in town so I could fit in to the party. Or, when my teachers compliment me on how I well I managed my food allergies on a trip. Even the smallest act of empathy fills me with such strength and joy.” — Indrani S.

24. “I always appreciate when people ask about my allergies to inform themselves, but then are able to switch the topic. Allergies are a big part of my life, but they don’t define who I am. Sometimes people ask so many questions that it makes me feel as though that is all that they see me for. I don’t mind the questions, but I like to talk about other things, too! Also, I wish people understood that I hate ‘feeling like an inconvenience’ for asking someone to refrain from eating certain foods. People that are understanding about my request make me feel not only safe but also important. It’s scary to live with a constant fear of being exposed to an allergen and knowing what could happen if exposed, but those that help make my environment safe and make me feel like I am more than my allergies make things easier.” — Morgan L.

25. “We’re not just being difficult or dramatic.” — Missy I.

26. “Avoiding a single food can be more difficult than it sounds. When others help by making food allergy accommodations, it is truly appreciated. ‘Jokes’ about putting allergen in food are not funny.” — Josh D.

27. “Whenever I read labels my friends think I’m being dramatic. They always say things like, ‘It’s fine, trust me.’ I’m not trying to be difficult, and I’m not trying to offend anyone, I’m literally just trying to protect my life.”  — August Maturo.

28. “I didn’t develop my peanut and tree nut allergies until I was in my 20s. People think we are exaggerating until they see us gasping and blue… I have a sign on my salon door that states NUT FREE ZONE and in small type, it says, ‘No peanut or tree nuts allowed on premises.’ People think it’s a joke.” — Heather B.

Banner image of actor August Maturo who has food allergies.

Image credit: Axel Muench

Originally published: September 6, 2018
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