Sunday, September 8, 2013

"Can't You Take a (Food Allergy) Joke?"

Somewhere along the way in this 18 year journey, I lost my sense of humor.

I know this is not news to any of you. After all, the "bitch" is right there in the title.

Still, I'm reminded of the loss every time I look at the web statistics for this blog. The web stats include a list of search terms people use to find my articles. Know what one of my top search phrases is?

"Food allergies are fake."

I also get lots of hits from "food allergies overblown", "food allergies exaggerated", "crazy food allergy moms", "nutty food allergy parent" - you get the idea. Any time I look at my web statistics, I get a little reminder of how much hate is floating around out there for kids with this particular medical condition.

The articles that match those search terms though (like this one) mostly defend food allergy parents. It makes me wonder what the people who find my page that way do next. Do they read the article? Or do they wander off looking for another place on the web where they can hone their hate with other people who believe food allergies are imaginary/a pain in the ass (we know!)/the latest flavor of special snowflake-hood?

If you follow them down the rabbit-hole and challenge them on their hatred, eventually you get some version of "geez, can't you take a joke?" Well, no. Unfortunately, I've forgotten how. Explain to me again how funny it is that my son has to grapple with the logistics and fear that comes from a food allergy...and then, on top of it, has to pretend that the bullying doesn't matter to him.

There are days I think how did we as a community get to this place and I'm absolutely overwhelmed by the thought that it will never get better. Food allergies will be forever polarized and my son will always have to fear that one teacher/waitress/boss who buys into food allergies being fake and therefore is just a little (or a lot) less careful than he or she needs to be to keep my son safe.

Because that's the reality: unless he goes through life eating only food he himself prepares, he will need to trust people. When half the population doesn't believe in food allergies (to the point that people are taking the time to search for phrases like "I HATE FOOD ALLERGY KIDS"), how well-placed is that trust?

There was a great article in Slate a while back about the dangers of loneliness. A phrase jumped out at me:
In terms of human interactions...the key is in the quality, not the quantity of those people. We just need several on whom we can depend and who depend on us in return.
With food allergies, it's all about quantity. It's about every person who touches my son's food, or schedules an event involving food, or who makes a choice to support him (or not). It takes all of them  even the ones who are actively spending their time searching for others who hate food allergy kids as much as they do.

A little further down in the Slate article, I saw this:
When we are lonely, we lose impulse control and engage in what scientists call “social evasion.” We become less concerned with interactions and more concerned with self-preservation. Evolutionary psychologists speculate that loneliness triggers our basic, fight vs. flight survival mechanisms, and we stick to the periphery, away from people we do not know if we can trust.
Ouch. The food allergy periphery. Choosing never to eat out. Choosing to avoid social events that involve food. Choosing not to share information about a food allergy with others because of the fear of ridicule. 

I see the haters. Even when I don't look for them in my blog stats, they're there, in my peripheral vision. Where is the magical line between safety and loneliness? 

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  1. Thank you for your post. I try not to see the negative attitudes towards parents of kids with food allergies, but while working with my school district to be more inclusive, and allergy aware, I run into it a lot.. It is such an emotionally charged issue for people... especially in schools. I feel very alone sometimes as most family and freinds roll their eyes about it, and think I am way overstating the severity of the allergy, or the social impact it can have on school age kids. A recent post by our local news station on food free birthday celebrations in school was bogged down by negative comments, and someone even posted jokes about food allergic kids.

  2. GREAT point and conversation. I think one of the keys is what Anonymous said, "emotionally charged".

    I have trouble wrapping my head around the concepts that life threatening disease is being judged by emotion instead of scientific fact? Does FA touch the nerve of I don't want to be told what to do? Or does it hit the nerve about food being part of our culture and we are stuck in "my way or the highway" thinking?

    I still wonder if cancer patients were dealt this same hand when cancer emerged? I have a feeling they did.

    You are right, how did our culture get her?

  3. Your blog is a lifeline for me. One ongoing concern that I grapple with are the blurred lines created by the parents that say their children have an anaphylactic food allergy without any allergy testing. A number of children in my daughter's school say that they have the same peanut allergy as she does, but they don't have an emergency action plan on file and they don't have a prescription for an Epi Pen. We are at the opposite end of the spectrum. My daughter has had peanut component testing, we provide multiple Epi Pens to her school and we have an emergency action plan signed by her allergist. However, her allergies are sometimes treated with skepticism because teachers and administrators have witnessed these supposedly allergic children eat foods in class that are off limits to my daughter. I know that you've touched on this topic in the past. It's becoming a big challenge to us in getting educators and parents to take us seriously.

  4. I definitely think there are two things going on here, and we have to address both if we hope to make change:

    - People do not always have enough information. EMC, perhaps you could try explaining things on the basis of *threshold*. It is very possible to have a high threshold and still have anaphylactic allergies - my son is in this category. But kids who have a low threshold have to have a whole different set of precautions.

    - People are polarized about allergies. If you haven't read my column before, this one talks about some of the issues:

    I think there are many reasons this particular medical condition gets polarized while something like cancer does not:

    - Food is social, so restricting it feels punative

    - Food allergy parents sometimes require others to change their behavior (such as school bans), which brings out the libertarian streak in some people

    - 25% of the population says they have a food allergy. Food allergies are invisible. Who wouldn't be skeptical under those conditions?

    - Food is one of the areas parents (usually mothers) use to control their children. It's sad, but it happens more than we probably know.

    The combination makes us a target. The trick is to figure out how to get what we need (and how to advocate effectively), despite the polarization.

    I'm still thinking about that. It's not unsolvable, but it is a difficult marketing/PR puzzle. I've actually been studying about what worked for other polarized health conditions, like AIDS.

  5. Interesting link to the "Spontaneous resolution of peanut allergy decreases after 8 years old" study. Gotta say, though, that it made me want to cry. Or maybe scream. (Probably both.) I thought this idea, in fashion around the time my kids were diagnosed (just past the 90s), had been discredited. *sigh* One more instance of the psychological roller-coaster ride that that involves tracking the non-linear progression of FA research. But . . . whatevs, as the kids say. Mine are too old for spontaneous outgrowing to be a realistic possibility. But I feel so, so sorry for the parents of newly diagnosed FA babies and toddlers. Reports like this compound the anxiety of keeping your kids out of the ER with the anxiety of keeping them at freaking zero exposure (what does that even mean?) to maximize odds of ditching a lifelong disability. It's a crushing psychological and social burden.


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