“Oh, so you can’t have Reese’s peanut butter cups? That sucks.”

Not really. Not being able to eat certain foods is less than 5% of what sucks about having a peanut allergy.

The bad part is having been raised in a world where food might have lethal poison in it, and nobody cares that much about warning you in advance if it does. The worst part is having developed a phobia of eating new foods in general, because I live in a world where food is unpredictably unsafe.

A peanut allergy is not a horrible disease. I’m not in agony. But there are many things that suck about having a peanut allergy. Such as the tedium of having to read the ingredients of every food item I ever eat. (Side note: you have probably eaten far more “carageenan”, “xanthan gum”, “soy lecithin”, and “citric acid” than you’re aware, among many other things. It’s crazy how many foods contain added acid. Also, if you’re drinking juice and it’s not apple juice or orange juice, it’s mostly pear juice. You’re welcome.)

“May contain traces of peanuts”/”Manufactured in a facility that also processes tree nuts” means I can’t eat it, and lots of stuff has that kind of label. Some people with severe peanut allergies will eat “may contain” foods, but sometimes those people die. I’d rather not eat the cookie than stress while eating the cookie that I might be about to have a terrible, life-threatening reaction. Also, these “may contain” labels are optional(!) so I have to guesstimate the trustworthiness of the brand, and if the brand seems untrustworthy (foreign) I avoid it even if it doesn’t explicitly say “may contain traces of peanuts”.

I have anxiety trying new foods even if they should be fine, because you never know. If it’s something being sold by a small company, the anxiety is reasonable. If the ingredients say it’s fine and I trust the brand, I still feel anxious, because growing up with food being dangerous sometimes makes you phobic to eating new foods even when it should be safe.

I can’t eat the cake at birthday parties unless it’s my own. Growing up, my mom was nice and gave me a Mars bar or something instead, so I didn’t feel left out. I often can’t eat the food at people’s houses, like a Christmas dinner or something. Even if people assure me there’s no nuts, they didn’t grow up with a nut allergy, so they don’t know how serious it is and how careful you have to be. Maybe they used some butter that had been cross-contaminated with peanut butter. Or they just straight up put nuts in the food they try to give you, and then after you press them for the ingredients, they say “oh, I didn’t know Skor had almonds!” Generally I don’t eat food other people try to give me unless it’s my mom or grandma.

I have to pay for two epipens every year. Two, because around 1 in 10 anaphylaxis (life-threatening allergy) reactions require more than one dose, and you can’t always rely on an ambulance getting to you in time, especially if you’re camping or something. And doctors require me to explain this to them every time I ask for two. “You don’t need two.” Yes I do. Your knowledge is based on nothing. Also, I have to carry these them around with me everywhere, which is annoying. And I think I’m supposed to wear a MedicAlert bracelet or necklace but I don’t because I don’t like wearing stuff on my wrists or neck. I assume the epipens on my waist will be enough of a clue if someone finds me unconscious, clutching at my throat.

I don’t really eat at restaurants. I used to. After giving the waiter or waitress my order, I would say, “I have a severe peanut and nut allergy.” Then they would say something back. If what they said back sounded like they had been trained to handle allergies, which was the usual case, then I would trust the employees and would hope they’re not like those rare stories like the restaurant owner who killed his customer with a peanut allergy after assuring them there would be no peanuts, after swapping almond powder for cheaper peanut powder. He only got 6 years in prison, by the way. (More than if it’s a food manufacturing company who kills you via cross-contamination, in which case they just say “oopsie daisies” and nobody gets in real trouble.) Anyway, if the server seemed competent, I would trust it. If there was a substantial language barrier or they seemed incompetent, like they’d never spoken to someone with a nut allergy before and made no offer to let the kitchen staff know about my allergy, I wouldn’t eat there and would just get a drink.

Now I don’t even do this. If a restaurant serves nuts, I won’t eat there. It’s just not fun, eating great food but also in the back of my mind being unsure if a horrible reaction is about to start. I guess I’m just more cautious now, only eating at restaurants like A&W that don’t have nuts on the menu (though some items are potentially “may contain” nuts from the manufacturer, and I avoid those.) Though even this can be a risk. I used to work at A&W, and every morning before we opened for business, this older woman who worked with me would make herself a peanut butter sandwich right on the surface where we prepare the food. Another A&W allergy story, I once had a parent come in with a child who had a severe wheat allergy, and they asked me what items would be safe for them. I told them to leave.

I don’t usually kiss my girlfriend on the lips. We live together, and it’s been probably over a month since we kissed on the lips. She likes to eat things I’m allergic to (we don’t allow nuts in the house, but she likes things that are “may contain”, and hummus which I’m kind of uncertain about.) So if we want to kiss, I have to ask her what she’s eaten in the last 24 hours. People with peanut allergies sometimes die when they kiss someone who’s eaten peanuts several hours earlier, and nobody knows the exact cutoff, so 24 hours seems like an acceptable duration to be totally safe. Given this, we mostly don’t bother. If we wanted to kiss more often, I’d ask her to live with the same precautions I do, but that seems burdensome. You might think being unwilling to kiss people without knowing what they’ve eaten in the last 24 hours might have gotten in the way of dating, but in my experience if she wants to kiss you before you ask her what she’s eaten, she’ll still want to kiss you after.

My brother’s friend had a peanut allergy and often forgot to bring his epipen with him. One day, I saw that he had actually brought it with him and said, “Wow, you actually brought your — probably expired — epipen with you this time!” His response: “How did you know it was expired?” Anyway, he’s still alive, so maybe he’s right and I’m wrong for being overly cautious, but also some people that incautious just die.

(It’s hard to find the fatality rate for a single anaphylactic reaction but it seems like maybe around half a percent if you use an epipen and get to a hospital. Worse, obviously, if you’re out camping with no epipen or something.)

My whole life I’ve avoided people eating nuts. I can be in the same room as them, but don’t want to sit right next to them. You ever have someone talking to you, and a little bit of their spit ends up in your mouth? I try to socially distance from people eating nuts to avoid stuff like that. And avoid touching things they touch. Though the risk isn’t high, it’s not like there’s good data on any of this, like what the percent chance is if you behave this way or that way that something will happen. You just have to go with your gut and decide how cautious you want to be. The curse of dealing with a rare problem is that there’s no good data.

It’s not really a problem as an adult, but growing up I had to fear people not taking my allergy seriously. Waving my allergen in my face, stuff like that. Or just chasing after me holding something I’m allergic to. I’ve never feared someone would actually try to murder me using my allergens though. Sometimes in movies or TV shows you see a murder case where the victim was killed with a peanut, and they had a peanut allergy. Honestly, I’d welcome that compared to a bullet to the head. I have my epipens and expect like a 99% chance of survival, though it won’t be a comfortable experience. If they also stole my epipens, fatality rate is probably around 10x higher, but I’d still take that over a bullet to the brain. Not an effective way to kill someone.

Another thing that sucks is not being sure exactly what I’m allergic to. For most of my childhood I had a “peanut/nut allergy”. Basically, I reacted to peanut several times, but my mom was told to keep me away from tree nuts too out of an abundance of caution. I think this is no longer what they’re supposed to say, but it was at the time. When I was a teenager, then I got skin/blood tests for each nut to see what I was allergic to, specifically. My mom’s friend was rather confused when my mom said I was going to have a doctor’s appointment to “separate my nuts”. Anyway, it came back positive for a lot of nuts, so I just avoided them all until adulthood.

Now, my skin and blood tests say peanut, hazelnut and walnut, but everything else might be okay. The skin tests and blood tests are not super accurate; The next step after blood tests is an oral food challenge, AKA a panic and death challenge, where you go to a doctor’s office and eat the thing you’ve been trained to view as deadly poison your entire life. I did it for almond. It was fine. I can have almond milk now. My mom then did it for walnut (I think?) and had an anaphylactic reaction, and she said it was horrible and not worth it just to find out if she could eat walnut. I haven’t bothered testing other nuts. Almond and hazelnut are the two that always pop up in ingredients lists and “may contain” lists (besides peanut), and I failed the hazelnut blood test so I’m most likely allergic (but it’s not a guarantee). Anyway, maybe I could be eating pine nuts and chestnuts, but it doesn’t seem worth putting myself through, and people in rare cases die doing those challenges so they’re not 100% safe either.

I won’t eat peanuts even in video games. I don’t have much to say about that, but it’s true. Not out of fear, but because peanuts (and the squirrels who carry them) are the enemy. As is Canadian McDonalds, who were the safe haven for peanut allergy kids for many years until they made their entire restaurant “may contain” so they could introduce the Skor McFlurry. (I just learned that McDonalds was only safe this way in Canada, and McDonalds elsewhere was probably unsafe the whole time.)

Overall, a severe peanut/nut allergy is a confusing, exhausting mix of real risk, phobia, and dealing with other people’s ignorance and nonchalance. Most people don’t get it. I don’t expect them to. But maybe now you understand a little better.

Finally, some little things that would make my life easier:

Mandatory labelling of “may contains”
Food being sold online or on apps always lists the ingredients (often not the case on Amazon or Instacart)
A cure for allergies! (A real cure, not immunotherapy, which is too risky for nut allergies, doesn’t always work, and takes years.)

Posts tagged "personal"