What Is A Food Allergy?
What’s The Food Allergy Spectrum?
I first heard food allergies being described as a spectrum through Dr. Ruchi Gupta, the author of Food Without Fear: Identify, Prevent, and Treat Food Allergies, Intolerances, and Sensitivities (a book I highly recommend). I loved this description because it’s so validating to people like me living with food allergies that can often look very different from others’ food allergy experiences. No food allergies are alike, because everyone’s immune system is different. In fact, one scary reality of food allergies is that no one person’s food allergy and allergic reactions are consistent, either. When it comes to food allergies, nothing can be generalized, and each food allergy is as individual as the person themselves.
How To Talk With Others About Food Allergies
There are many scenarios where someone would need to bring up their food allergy, especially if it’s life-threatening, the way I am to peanuts. I’ve found that when I’m talking to friends about my food allergy, it’s typically in a more relaxed way, which actually is not great because I may not be explaining basic important facts like how to administer my epinephrine. However, when talking to my employer, I may only talk about how I have epinephrine and Benadryl on me at all times, and forget to give the more human-side of my food allergy, the ones maybe my friends are more familiar with, understanding how it impacts my day-to-day, and not just in a work setting, for example.
It can be tricky to communicate and talk with others about food allergies, because usually there’s a reason it is coming up, and there’s only a certain amount of allotted time to speak in. This makes it so I have to prioritize what I want to say about it carefully, so the more important is discussed first. That’s one reason platforms like social media, blogs, and authors writing books related to food allergies is so impactful because all the various sides co-existing at once can be discussed and expressed in a way that may not be possible in a 2-minute interaction with someone in-person.
The Importance Of Clear Communication With Food Allergies
As I mentioned, I typically start my communicating the most important food allergy items first, like that I have epinephrine in my purse at all times. Since everyone’s food allergy varies and is different, because it’s a spectrum, there are details I need to give so people understand my allergy and that it may not match the same food allergy another person has experienced. Defining what your food allergy is, if it’s life-threatening or mild if you use medication for it and when, and your boundaries and accommodation needs are a great place to start and keep communication around your food allergy clear and concise for others to understand easily.
I used to get embarrassed about my food allergy, and feel shame around it, and when I’d need to ask for an accommodation or bring it up because I was having a food allergic reaction, I hadn’t practiced what I wanted others to know and didn’t know a clear way to communicate my own needs and experience. Just like any skill, it takes practice, and is completely normal, and even should be encouraged to practice food allergy conversations you want to have first so you can make sure it’s clear and coming across the way you want others to take it in. When I didn’t practice and felt uneasy about a conversation, normally miscommunications happened, I would not make my point clear, and people would be confused about my food allergy and what I needed from them. I;m here to tell you there’s no shame in asking for accommodations or having a food allergy & to practice conversations and write down your main points you want others to take away from your discussion beforehand if you need to.
My 3 Main Communication Takeaways:
- Decide what you need others to know about your food allergy
- For example, you may need others to know that you keep Auvi-Q epinephrine in your purse because you have a life-threatening peanut allergy, and that once you pull the tab open on the medication it will have audio steps that walks the person administering it through how to inject it and to call 911
- Decide what you want others to know about your food allergy
- This includes anything that’s different from a need, so it can come second in terms of priorities, but is still important!
- Don’t be afraid to practice having difficult food allergy conversations before you have them
- Doing so can help you organize your thoughts, make the conversation be more concise, eliminate confusion and miscommunications around your food allergy and food allergy needs.
The Invisible Part Of Food Allergies
I’ve heard the term “allergy aware” over the years and I always wondered exactly what it meant, but it’s really quite simple! Being goof allergy aware is just a matter of listening to the food-allergic individual, taking them seriously, and respecting their food allergy experience. Since it is a food allergy spectrum, one person with a life-threatening food allergy may have a different experience from another, and thinking on a larger scale, different countries handle food allergies different and so this causes different food allergy struggles and experiences, too! Cough cough – how the FDA in the U.S. doesn’t transparently label for top food allergens the same way that is required by the The European Union (EU), and done better for consumers in the EU.
Seeing Is Believing
For many people regardless of disability, chronic illness, or just personal experience as a whole, as a society we have a tendency to not believe something until we’ve seen it/experienced it ourselves in some way and been impacted by it closely. Having an invisible disability can make getting others respect, empathy, and connection a bit more difficult if they can’t relate to what your words are telling them, since it may not be happening in the present moment. Sharing your experience with an invisibly disability, if you have the energy to and want to, can be powerful in this way to educate others on what it’s like to have an invisibly food allergy/disability/illness, etc. So often on social media we see people sharing the highlights and the good, I’m guilty of doing this as well, but if we talked more about the whole picture, I think we would develop more connection with other people and their experiences and have a deeper understanding of others lives in a meaningful way.
Example Of An Airborne Allergic Reaction
In college I interned at a local art gallery while obtaining my undergraduate degree, and it was a great experience learning how to hang artwork and take down exhibits and see what it takes to run a gallery. One day, though, I walked into the empty gallery space and immediately was overcome by a strong sensation that bolted up my nostrils, up and down my spine and up into my head, and I felt very uneasy and dizzy. I looked around, and saw no one, in fact, the room was completely empty. There were folded tables stacked against a wall, but besides that, nothing out of the ordinary. I actually didn’t even touch a door handle to get in, because the door was propped open, so I continued inside. Within a few minutes I started feeling nauseated and my lip began to swell. I went outside and texted my friend who was coincidentally working a writing workshop in the same gallery space a few hours earlier. I asked her if there were peanuts at the event, and assumed she would write back saying “no” and I’d get some peace of mind. Instead, she immediately replied, and I quote, “ZOE, GET OUT OF THERE! THERE WERE MINI SNICKERS EVERYWHERE! A HANDFUL AT LEAST PER TABLE, AND THERE WERE SO MANY TABLES!” I appreciated her honesty and promptness, and ran to my car while popping Benadryl into my mouth, getting my epinepherine handy in case I needed it, and texting the art gallery owners explaining why I had to leave suddenly and miss today and get home due to having an allergic reaction to the space.
This is just one example of an airborne food allergy reaction, but it shows you that without even touching a surface, it can happen. I’ve had this happen many times in various scenarios from high school to present day in my 30s.
As “Deadly As a Loaded Gun” Example
Trigger warning for this section due to talk of guns, bullying, and children. I would not include this example unless I really felt it was the best representing my point, and I do feel it is, so I’ve discussed it here describing how deadly a food allergy can be. However, feel free to skip below to “Inexperience With Severe Food Allergies” instead.
One tricky part about living with a food allergy is that if others don’t have one and can’t relate, it can seem silly to the average outsider who doesn’t consider food as dangerous, just as an enjoyable, normal, non-threatening thing we all do 3+ times a day. However for those with food allergies and in my experience, I see food as a threat and have to treat candy/food as dangerous and be skeptical and curious at all times when eating.
In my above airborne example, my friend that texted me about the Snickers candy understood that food is dangerous to me, and I so appreciated this. I’ve seen parents of children with severe cross-contact and airborne food allergies share posts on social media comparing children eating a PB&J next to their child to “holding a loaded gun next to them”, or “bringing a loaded gun to the lunch room”. Reading parents sharing this in food allergy groups was triggering for me, as gun-violence in schools and with children is horrific, and when I first read the messages, I initially thought it seemed way too extreme. But it stuck with me, and the more I thought about it the day or two later, the more I came to realize it is in fact an extremely comparable situation. Peanuts are, and can be used as, a weapon against someone with a food allergy and need to be taken seriously. Food allergens are just as deadly, the control can easily be in other person’s hand, or a non-transparent food company’s hand, and it is preventable. Here is one of those “loaded gun” type articles on food allergy bullying, in case you want to read it.
Food Allergy Bullying
Food allergy bullying is real, and unfortunately it is a common everyday situation for allergic individuals and their families to deal with in various environments. As I pointed out, most everybody eats at least 3 times a day, and often not in a secluded setting or in the comfort of your own home. I believe this specific “deadly as a loaded gun” comparison has been repeated often in the food allergy community because it is attention-grabbing, and accurately expresses the true severity of a food allergy that is hard to convey to others. In the past, and even sometimes still, I’ve felt like the life-threatening reality of my food allergy is too much for others to handle, and I may come off as up-tight or too extreme when asking for accommodations. That’s because that is what society has taught me about my food allergy experience and having a food allegry disability, and falling outside of the “norm”. I’ve been threatened by close friends saying they may sneak a peanut onto a sandwich, and have been bullied by other passengers on airplanes not wanting to skip eating their peanut snack on board, to name a few bullying instances. I’d go as far as to say our current FDA labeling allows food corporation conglomerates to bully and disrespect consumers, allowing companies to care more about their own legal protection and liability over the safety of their consumer which they rely on to make a profit.
It’s important to state that this “deadly as a loaded gun” situation, a.k.a. being in contact with something unknowingly that could kill me, arises during my daily routine without any type of bullying taking place, too. I could be passing someone eating something with peanuts on the street and react without the person having any knowledge whatsoever being the cause of my allergic reaction. This is why it’s important for me to make people aware of my food allergy in as many situations as I can, so life-threatening reactions can be avoided as often as possible. When I put myself and my body first, I do tell others about my allergy and ask for accommodations. When someone is aware and continues to eat peanuts, that’s when the line crosses over to potential food allergy bullying, and that does need to be directly addressed to convey seriousness to the other person. Ultimately, it could save a life and food allergy bullying should be taken seriously.
The statement “as deadly as a loaded gun” was eye-opening for me in a number of ways. Until it was put into this extreme perspective, I didn’t realize how emphatically I needed to be explaining my peanut allergy. I also felt less alone in my peanut allergy, and like there is a community of individuals just like me existing out in the world, figuring out ways to illuminate their food allergy experiences so others can understand them. I really felt inspired and empowered by it, and wish there were an alternative example that I could use that is just as powerful. I’ve been brainstorming but haven’t come up with one, if you do, please feel free to share with me, because I don’t want to trigger gun violence in anyone if I can help it.
The 11-year old in the article I linked above on food allergy bullying tells how he’s been taught to handle food allergy bullying, and his advice is powerfully direct! He explained,
“I would tell them that’s not nice,” Liam added. “It’s nothing to joke about. People can die of that (food allergy bullying).”
Communicating The Hard Truth Of Reality With A Life-Threatening Allergy
It’s always been a struggle of mine feeling like explaining my peanut allergy teeters the line of being too “dark”, but simply making it clear that death is the outcome of exposure is not a lie or extreme, it’s the plain truth, and so ultimately the truth needs to be discussed. My peanut allergy is serious and deadly, and I take many precautions and ask for accommodations due to it. I consider my cross-contact and airborne peanut allergy a disability, as I discussed more in my blog post of my personal food allergy journey and timeline.
Inexperience With Severe Food Allergies
One time in my work break room, a co-worker had told me they don’t bring in peanuts to work because of my peanut allergy, and that they bring cashews instead. Next, they mentioned to me that they grew up eating PB&J sandwiches and felt their parents would have been the type to come back at the school system arguing, “what do you mean my child can’t eat a peanut butter sandwich at school now? It’s his favorite lunch!” This was a bit upsetting to hear initially, but I also realize it is likely coming from a place of not being exposed to a life-threatening food allergy before. I was glad they shared that they’ve witnessed this response in their family before, but now that they know me and have experienced someone with a food allergy, their views and food allergy knowledge has evolved. Ultimately, this is what I discussed before of some people need to see it or experience it to believe it, and that’s just the reality. I’ve experienced this same ignorance in my own ways before, not understanding the perspective of someone else unlike me who has been through experiences I haven’t, and it’s the beauty of connection and being human, we’re all different and individual.
The food allergy spectrum is vast, so I see why explanation of what a food allergy means to someone is needed. I’ve determined that unless told otherwise, people most often know what they do about allergies from their own individual experiences with them, or know nothing and have no context. With Invisibly Allergic Food Allergy Blog, I hope to broaden what a “food allergy” can mean, since my airborne & trace-amount peanut allergy seems to be less common compared to other food allergies people are familiar with where it may not involve minuscule cross-contact reactions.
Prioritizing The Person
I want to share the message to not prioritize a food over a person’s life, and to not exclude a person, when you can simply exclude the food. I say simply because it is simple. What’s not simple is to live life with a life-threatening food allergy/food allergies.
I hope my blog can help spread the word on food allergy bullying, and the overall seriousness that often gets brushed off time and time again due to being uninformed. I’ve included some comics below that I feel encapsulate my experience of living with a peanut allergy.
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