30 Things Food Allergy Parents Wish You Knew
This post is a collaboration between The Mighty and Lianne Mandelbaum from the No Nut Traveler.
Food allergies are a unique condition — hard for most to picture because it is an invisible disability. Food is ubiquitous in many of life’s moments, and it is incredibly stressful knowing that to keep our children safe, we need some cooperation from others. As food-allergic parents, we are often subject to mocking and disbelief from those around us. This takes place in our schools, on airlines and on social media. This is not something we can joke about nor pretend is an issue from the past like a recent advertisement from the National Peanut Board suggests. People can have severe food allergies to a myriad of foods, and they undergo disconcerting situations every day.
I’d like to paint a picture of our food allergic world using the heartfelt commentary from The Mighty’s and my own community at The No Nut Traveler. I hope these responses give you a glimpse into the real challenges we face, like grocery shopping, label reading, navigating birthday parties, attending school, eating out in restaurants, job prospects and travel. This is a conversation that needs to take place because people don’t always get it. My hope is to reinforce the fact that food allergies are not synonymous with having a runny nose, watery eyes, itchy skin or a stomach ache. Food allergies are potentially fatal and can lead to death.
Our fears are not baseless, and neither are our precautions. This is a legitimate medical condition that needs to be respected. If you can step into our shoes, if only but for a moment, and consequently act with greater empathy, the world will be a safer and better place for all our children and adults who live with food allergies every day. We are so very grateful to those who do.
We hope you find the responses from the community helpful in understanding food allergies:
1. “The stress of the necessary constant vigilance while at the same time trying to let your children live a full life; teaching them how to be diligent without creating [extreme] anxiety — It is emotionally exhausting.” — Kim M.
2. “Our food-allergic kids are forced to lose a little bit of their childhood way too soon. They can’t joyfully shovel in birthday cake and treats at most parties, they have to show up at camp and school with all sorts of warnings and directions, and they can’t just enjoy treats handed out at a friend’s place. This isn’t our choice. It isn’t for attention. It sucks, but it’s to protect them — and no matter how much grief we take for protecting them, we will never, ever quit.” — Jonathan S.
3. “We deeply appreciate people who are helpful, kind and inclusive with our kids. A supportive community, well educated on food allergies and anaphylaxis, allows our children to thrive and survive.” — Susan K.
4. “We are not helicopters parents. We are just parents trying to protect and keep our children safe from the possibility of cross-contamination of a deadly food allergen that can hurt and harm our child.” — Thomas S.
5. “In an effort to help prevent my son develop anxiety over his food allergies, I have developed severe anxiety (secret!) because I want to give him the confidence to live his life to the fullest without fear and with confidence. But. It. Is. Terrifying. And I am not alone. There are so many parents struggling with the same, but you put a brave face on for the world and for your child and hope and pray that one day there is a cure or a treatment. You endure the god-awful comments people make and the exclusion your child endures, and you never let a day pass that you don’t say a silent prayer for the allergic children, teenagers and adults who die. Your heart breaks for them and their families. You say prayers for the parents who are able and willing to let their children participate in trials and the doctors, nurses and scientists studying allergies and working toward cure and treatment, that they are safe and successful. And you are grateful for blogs like this one where you can share and learn safely with kindness!” — Erin G.
6. “I wish people would understand that food allergies aren’t a choice. My son isn’t ‘choosing’ to have life-threatening food allergies!” — Eryn L.
7. “As difficult as it is for us parents, I don’t think people truly grasp the daily worries and anxieties our kids have to manage. Every lunch period, bus ride, sports/school/family event where food is included means constant vigilance and self-care. A little compassion with our kids will go a long way.” — Daniella K.
8. “I wish people understood the grief some families deal with. Life as you know it changes when a child has a life-threatening allergy. It can be isolating when the support of extended family and friends disappears. Our children need compassion and inclusion. We are grateful for those who are open to hearing and supporting us.” — Aleasa W.
9. “It’s exhausting mentally/emotionally. My daughter’s food allergies are my first thoughts every morning and my last thoughts every night. While I’m grateful she’s otherwise healthy, I can’t help thinking about college, dating, travel and all of life’s experiences that will be affected by her food allergies. I live in constant fear and with daily anxiety, while trying to keep her safe, included, emotionally healthy and not letting her think there’s nothing she can’t do. It causes tension between friends and family and quite honestly consumes me. I then wonder if I’m too cautious and not letting her experience things that are possibly OK. But is there such a thing as too cautious? People who don’t have to deal with this do not understand. I’ve accepted this but what I don’t accept is jokes, ridicule or unkindness about food allergies. My daughter recently played in a soccer game where the opponent yelled ‘peanut butter’ every time my daughter had the ball. Totally unacceptable!” – Erica S.
10. “Dealing with a food allergy is not simply avoiding the allergen in its most simplistic or obvious form — the allergen can be in an oil, a dusting, sprinkling, batter, broth, binder and so much more — and the depth of information we need to feel safe is just as daunting and frustrating for us to ask as it is for the person from whom we are seeking answers. If we miss one step or hidden source of the allergen, it’s a life-threatening mistake.” — Jesse P.
11. “Typically, illness is discovered, studied, treated and stabilized. Food allergies are not like that. They change with each season. Through elementary, middle and high school. Through friendships and relationships. From playdates to romantic dates. These children must always be learning, reading labels, visiting doctors and explaining themselves. They must always be alert, aware, courageous, understanding, ready to defend themselves. But most importantly, they can never make a mistake when it comes to their allergy… It only takes one mistake.” — Kimberly S.
12. “It isn’t an upset stomach or lactose intolerance. Anaphylaxis is caused by many foods, and every person with an allergy needs to be heard and understood about what can happen with exposure. We are exhausted. We are doing our very best not to rain on your party but to protect the beautiful kids we are raising. Our children are not their allergy, however, it’s never far from their minds or ours.” — Turn it Teal for Food Allergies
13. “Food allergies are a serious disability, yet has few of the protections afforded to other types of disabilities. People with food allergies have been kicked out of restaurants for bringing in safe food for themselves or their children, questioned by amusement parks for the same thing, been told everything in the restaurant has the allergen in it, been excluded from participating in classroom games or parties because of their allergen, told to sit at a food allergy table instead of with their friends, not been afforded the ability to pre-board our flight to clean seats, had our allergen passed out to everyone directly around them and been afraid to reveal allergies for fear of being kicked off the flight. So many people think people sneeze when they consume their allergen. I wish that was all that happens. I have seen my child vomit, get hives head to toe, then just become one swollen itchy and lethargic mess. Eyelids so swollen that she can’t even open them. And while Epinephrine is a lifesaver, sometimes it has taken not one, not two, but three shots of epinephrine for the reaction to stop increasing, along with prednisone and Zyrtec, Benedryl and Cortizone cream to help with the unbearable itching. Food allergies are deadly serious, and they are on the rise!” — Beryl F.
14. “I wish other people were more empathetic and understanding that not only is it about health and safety — there’s a psychological component for the child. Our allergic kids don’t want to be perceived as different… or fussed over publicly, etc. They want to participate with their peers and ‘fit’ in. So when other adults make insensitive comments… I just shake my head and remind myself that there’s still so much educating to do for both kids and adults.” — Bayleh L.
15. “People with food allergies mostly want to feel accepted and included and to be safe. Deliberately serving them their life-threatening allergens, mocking them with jokes, and other hostile behavior are not safe and threaten their well being.” — Nut Free Wok
16. “Food allergies are very serious and not a fad, though each day I look at my son growing and wish it were a fad. Truth be told, I hide as much anxiety as possible but I’m scared to death that one bite could end his life or have him fighting to stay alive. Parents of food allergy kiddos like myself do become very defensive in matters when it comes to food, and it is not out of hatred. We are just trying to protect our children the best we can, like putting a seatbelt on them every time they ride in a car. They have no control over this disease, just like we have no control over the driver of another vehicle not paying attention to the road. We attempt all we can to spread awareness and understanding that others would help look out for our children as you would your own. So if you come across a food allergy family, understand that we are worried every day and a little empathy, a want to learn instead of criticize goes a long way. Each human being has the potential to save a life, and knowing and understanding food allergies just a little better could place you in that position to be our allergy community’s hero!” — Jennifer O.
17. “Food allergies are not like seasonal allergies. Yes, we always carry medicine for our daughter who has life-threatening peanut and tree nut allergies, but an EpiPen injection is not like taking an Allegra. It might not work. Even if it does, it requires us to go to the ER because her symptoms might come back. It also makes her violently sick when she gets an EpiPen injection. And maybe more importantly, I would like people to understand the allergies are not her fault. She would much rather not have to live with them. I think we, as a society, lack empathy in general these days. Try to see things from someone else’s point of view.” — Kelly T.
18. “Anaphylaxis can happen from any food, not just peanuts. Some of my daughter’s allergies fall into the ‘other’ category, as they are not part of the top eight, yet they are still life-threatening. I’d also love if people realized that everyone’s reactions are different. Some children may get a rash from a certain food, while another child may get anaphylaxis from the same food. Reactions also vary in that your past reaction may not dictate how your body may respond to the allergen in the future. Thankfully, I’ve rarely encountered comments and questions from parents, teachers, classmates coming from a bad place. It’s usually just lack of information/food allergy education. Thank you to the many food allergy advocates here that continue to clear up misconceptions and promote inclusion!” — Stephanie S.
19. “People are too quick to dismiss allergies or say your child ‘will grow out of it,’ as if to say it’s not something that parents should worry about. People need to understand that some allergies are life-threatening. As a parent whose daughter has an airborne peanut allergy, I can’t take risks, I can’t assume that things will be OK. My daughter deals with the very real danger of her allergy 24/7, all year. She can’t let down her guard. That’s very difficult. All we ask is for some level of understanding and empathy from others. Is that so much to ask?” — Douglas L.
20. “[I wish people knew] how to recognize the early signs of anaphylaxis and how to use an auto-injector because anyone can develop a new allergy to any food at any time. Also, how being mindful and courteous with food helps us so much. By eating all foods in designated areas, washing hands after eating, and throwing out leftovers, it helps to prevent allergens from being spread around a playground, party, library, etc.” — Amy D.
21. “When it comes to requests for reasonable accommodations and compassion, it isn’t just about us or our kids. We’d like to save other kids, teachers, airline passengers — other humans, really, from seeing another person suffer and perhaps die in front of them. It’s so easy for others to see our advocacy work as self-centered and self-serving when in truth, if one really stops to think about the ‘what ifs,’ we are trying to create a low-risk situation to avoid trouble, trauma, pain, and even grief for all. Through billboards and ad campaigns, we routinely tell people to avoid texting or drinking while driving. That is sensible, and no one questions it. It would be nice if more people perceived the risks to food allergic individuals with a similar sense of social responsibility and decided to shoulder the work of advocacy with us rather than pushing back forcefully or being casually dismissive.” — Pamela P.
22. “Food allergies are not optional. We are not being difficult or overbearing, it’s a matter of life and death. Food allergies have physical and emotional effects on the child and the entire family. Living with food allergies is incredibly difficult.” — Erin R.
23. “It’s heartbreaking as a mother to watch your child live in fear over what should be simple interactions: going to school, eating lunch with friends, taking public transportation or even flying. It separates them from life and from others at a time when they need connection the most. As my daughter gets older and goes out into the world, I pray for her safety and for tolerance and compassion for her due to her life-threatening food allergies.” — Andrea A.
24. “Knowing that the reason that your child was not invited to a birthday party all their non-allergic friends were invited to was because they didn’t want to accommodate their allergies, is heartbreaking. Having food allergies can be isolating.” — Rakiya W.
25. “One aspect that is not emphasized enough for me is that food allergy is a disease in which people are told, ‘You won’t die if you do everything right.’ Not if you get to the doctors and they do everything right. The burden is on the patient to save their own lives or a parent to save their child’s life at a time of acute medical crisis.” — Gia R.
26. “More than anything, we want people to be willing to listen, without judgment, when people with allergies discuss their needs. So many folks make assumptions or jump to conclusions when they encounter food-allergic people: ‘your mother is overprotective,’ ‘you should just stay home if it’s that serious,’ ‘I can’t help you because I just don’t get it.’ Our food-allergic kids learn what they need to stay safe very early on. If people would truly listen to them, and to those of us who support them every day, we could make their lives so much easier while science works to find solutions. The best gift our family has been given is our core of understanding, attentive, and empathetic friends, colleagues and teachers who always ask, ‘what do you need?’ and ‘how can we support you?’ We need more folks like them out in the world.” — Karen P.
27. “Ensuring that kids with food allergies have a full and equal opportunity to participate is often incredibly simple. However, it is also a matter of federal law. Both the Americans with Disabilities Act and Section 504 provide that individuals who have a substantial impairment to a major life activity cannot be discriminated against on the basis of their disability. Not only can food allergy be a disability, it is one of the places culturally where disability continues to be something that is mocked, denigrated and joked about. We not only can do better, the law requires it of us.” — Mary V.
28. “When someone says to me, incredulously, ‘Someone can die from a food allergy?’ my jaw always drops. It happens more often than you can imagine. At school functions, dinner parties, sporting events. The average person doesn’t get it unless they know someone with a food allergy. I want to sit them down and tell them about Oakley, Jacob, Caroline, Alexi, Max, Elijah, Abbie, Amanda, James, Owen, Annie, Andrea, Joseph, Giovanni, and so so many more. I want to show them all the news stories of the children who have died from anaphylaxis. I talk their ear off about the stats and percentages of children who have food allergies. Definitely more than they ever wanted to hear — but oh so necessary. Food allergies are an epidemic and the general public is still so unaware of the risks of exposure. This summer at my child’s camp, parents complained that the camp was nut-free, bemoaning the fact that they wouldn’t be able to pack PB&J sandwiches for their child’s lunches. Really? There are many alternatives to slapping a PB&J together. The same goes for that person in row 5 on an airplane who doesn’t get it when an allergy-friendly airline doesn’t serve peanuts because someone in row 28 has a nut allergy. They think it’s an inconvenience because of someone’s ‘dietary preference.’ We need to turn around this perception and educate people who don’t have food allergies that anaphylaxis is real. A parent should never outlive their child. Yet, something deemed as trivial as a food allergy by many is stealing our children.” — Tatiana P.
29. “I really don’t think that non-food allergy parents can ever really grasp the everyday fear of losing a child to a food. It is a 24/7 of overwhelming, all-encompassing parenting to keep a food allergy child safe. There is no letting your guard down ever. There is no peaceful sleep. There is no worry-free play date at someone else’s house. There are no trips to the grocery store that don’t conjure up pure panic of an inhalation or touch reaction. There are no stress-free plane rides. No family holidays without lengthy phone calls to relatives which in many cases do not end well because people are not going to understand that an allergen brought to a Christmas party can kill your kid. No Halloween or Valentine party without at least one parent insisting his kid will forever remember that they couldn’t bring in the wheat/milk/peanut containing treat. There is not a second in a day that a parent does not worry. My kids who are teens now still remember being bullied. The exact way they felt. Where it happened. The pure hatefulness in the kids. They remember the flight attendants and passengers saying it’s survival of the fittest and people with food allergies should just stay in their house. They remember the flight attendants eating an apple spread with peanut butter in between passing out drinks. Some things can never be forgotten even as life has gotten easier for us as a parent I will forever have PTSD. I will forever read labels. I will forever watch babies eating a top eight allergen and worry they might have a reaction. I will forever read all the stories of life lost due to a food. I will always weep. Sob. It is unbearable.” — Danielle B.
30. “Since there is no cure nor a universal therapy that works for every child, risk reduction is one of the most powerful tools a child and parent have to prevent allergic reactions. I want people to know that the best gift they could ever give a family managing food allergies is the gift of helping reduce risk. Be it by buying safe foods, asking questions, offering compassion or reducing the amount of a nut on an airplane. Every action has power beyond words.” — Caroline M.
Find Lianne Mandelbaum at the No Nut Traveler, Facebook and Twitter.
Getty image by John Howard