The Food Allergy Bitch Manifesto

This week is the 1-year anniversary of this column. That's why I'm always surprised when I get comments from readers who challenge themes that have appeared in the column over and over. (I realize people do not read every column...but still!)

So today's post is the Food Allergy Bitch Manifesto. These are things I believe, that I write about constantly, where my opinions are not likely to change. If you disagree strongly with most of these then you're probably not going to like me or what I write very much!

1. Don't call your or your child's condition an allergy if it doesn't conform to the clinical definition of allergy. A food allergy means something specific to doctors. A food allergy involves the immune system. Part of the reason the term has become so meaningless over the last 20 years is that people who have food intolerances, or who even just don't like a particular food, have appropriated the term.

I am never going to be o.k. with that. This kind of truthiness affects our children. People discount the life-threatening nature of their condition because others are using the term inappropriately. If you come to my web page or Facebook page and comment in this way, I am going to call you out on it, every time. Which brings us to...

2. Follow the money and consider the source accordingly. There are a lot of people in this industry who are making money off of frightened food allergy parents. A LOT.

I'm not saying you should discount everyone in the food allergy world who makes money. There are many people who have started businesses in this area specifically to help others. But a funny thing happens when money comes into the picture. Rather than alienate potential customers, many advocates who run businesses simply loosen up their standards. You suddenly see topics creep into their support materials like "clearing allergies" through NAET, or IgG testing, or magical wooden bands (still my favorite!). If challenged, they say "it's just posted for discussion." They want to have their allergy-free cake and eat it too.

I have seen several examples over the last year of situations where I think money played too great an influence. An advocate with a busy support group who set up a PayPal account for donations to defray the costs of her personal health situation. A new food allergy foundation whose only purpose seems to be to collect cash, without any promise as to how it will be used. Advocates who also just happen to sell bracelets, or advice, or books. Advocates who have so intermingled their personal and professional lives that their child outgrowing an allergy is something that can't be publicly admitted.

No they're not all corrupt, but monetary motivators should definitely be factored in when evaluating a source of food allergy advice.

3. Be respectful of allergies, not reverent about them. Allergies are something to be managed, not worshiped. There is no "true believer" way of dealing with them, no right words, no absolute truths. The truth is that researchers know little and moms often know even less.

It's so easy for habit to become dogma before we even know it. The next thing we know, we're eviscerating some poor fellow mother on a chat board because — gasp! — she doesn't follow the (sometimes crazy) rules we've created for ourselves.

It's no secret that I think people should push past their comfort zone. Ask doctors about treatment options. Ask about challenges. Ask about necessary vs. unnecessary precautions. If needed, get a psychologist involved to address anxiety issues. Learn to live in the boat with the tiger with every tool of mastery you can find. No one has all the answers, even the consultants who tell you they do (for the right price).

4. Don't surround yourself solely with what makes you comfortable. It is completely possible with the advent of the internet to build oneself a fantasy sand castle of thought. If you don't like what someone says to you, only visit sites that tell you what you do like to hear. Or, better yet, find or even create a community of people who only reinforce what you already believe.

There's a huge danger with the internet. Anyone can be a publisher or a community organizer. Anyone can say whatever they want to say. That's why we've seen such a rise in conspiracy theorists: it is now literally possible to find someone else who believes what you believe, no matter how crazy it is.

I guarantee you  — what you think about food allergies is not what your family, or friends, or teachers, think. Yes, they may be wrong in many aspects of their thinking, but you are not likely to completely change their thinking through education. They, too, have built sand castles. There's value in hearing and understanding  other competing viewpoints.

There's a concept in psychology called projection: ascribing blame to someone or something in the outside world that are really all about our own inner battles. When we read something about food allergies that bothers us, that makes us think, that we discuss over and over on chat boards or with friends, it's a good signal that we're internally conflicted about our choice. (People who don't experience that conflict simply walk away without another thought.)

Conflict is good. We should always be questioning. Too much time with "Mirror, mirror, on the wall" never ends well.


Follow me on Facebook or Twitter  

Re-Branding Food Allergies

So Monday's post got off into the absurd...probably because I got depressed while writing it. It started out as a serious post about polarizing issues and how they relate to food allergies, and veered into science fiction.

It's easier to talk about ray guns than solutions. I did do a little reading about de-polarizing hot topics, just to see what the experts say. All of them tend to start with the same point:

Acknowledge the concerns of the other
side and admit where they are right

Hmm....

It's pretty easy to sum up the thing that the disapproving, polarized 50% say about the food allergy community:

"Most of them make up allergies"

This is where things get hot, and where I really earn my bitch title because...for the most part...I agree.

I am frankly tired of making the rounds of the chat boards and seeing mothers say things like "my Susie gets a stomach ache and the sniffles every time she drinks milk. How do I get a ban at my school?" And I'm tired of reading the laundry lists of allergies diagnosed by test only, handed to the mother who eliminates milk, soy, peanut, eggs, wheat, corn and rice without a blink.

One interesting thing I've realized about my blog: because I don't make money, I really can say whatever I want. Too many allergy magazines and chat boards have an ulterior motive: separate the frightened from their dollars, either through readership or direct product purchases. That means they have no interest in telling people their children really don't have food allergies. The more the merrier, and often the moms who are the most over the top are also the most likely to want all the bells and whistles (the magazine subscription, the medication bracelet) that come with a real diagnosis. 

Which brings me to re-branding. Re-branding is a wonderful strategy, employed by businesses that get into hot water. (The Enron name has too much baggage? Just rename it AEI!).  

My proposal is that we simply re-brand food allergies. Too many people have glommed on to the term to the point that it's the object of ridicule. 

Where before I might have said "my son has food allergies", I need to start saying something different from now on, like:

"My son has an immune disorder" 

or 

"My son has protein-induced anaphylaxis"

or 

"My son has a hyperimmune reaction that
causes swelling and wheezing"

Any of those work for you? I like the last one a lot because it's not as easy to appropriate by the moms who really do make this stuff up. Swelling and wheezing are a lot harder to fake than sniffles and phantom stomach pain.

I understand why food allergies are polarizing. A lot of people are asking a great deal of others (food bans, restricted activities, etc.) without any proof that their allergy is serious...or even real. 

The Emperors are clearly out there.

I honestly think the only hope we have of ever being taken seriously depends on dealing with the 23% of the population who believe they have a food allergy but who DON'T. 

Perhaps component testing will finally provide a way to tell people they're not wearing any clothes. 

Follow me on Facebook or Twitter  

Stand Back, Everyone - Food Allergies Are Being Polarized!

I should have put two and two together. I should have thought about the possibility. After all, there have been hints...and portents.

Polarization

It all makes perfect sense now. 


Surely you've heard of polarization! It's going on all around you! No? Think back in time...time...time...

Global warming. 20 years ago, it was just, well, science. We knew it was happening, that it was bad and that we'd have to change, or figure out a technical solution, or both.

*@ZAP!$%

Once that polarizing ray hit it, one's stand on global warming didn't have anything at all to do with the science. Instead, what you believed came down to what you wanted to believe.

George Zimmerman. *@ZAP!$% The debt ceiling. *@ZAP!$%  Gay marriage.  *@ZAP!$%


All polarized.


Do a search on the words "polarized issue" and you'll see what I mean. EVERYTHING is BEING polarized these days!

I never thought it could happen. I never thought a medical condition could fall under the bright beam. And yet...the signs are all there.

• A recent Thomson/Reuters health poll showed that 49% of households believe that food allergy fears are blown out of proportion. Populace divided 50/50%. Check.

• More information doesn't help, because both sides provide information. Truthiness. Check.

• The issue gets tied to other hot point issues, like food restrictions in schools or overprotective parenting. Controversy. Check. 

After the Mylan ad fiasco, there was a flurry of cries from our community for "More Education!" In post after post, many people said things like:

- They just don't understand that allergies can kill!
- We have to do a better job of educating the world at large! 
- Just show them the Sabrina Shannon video! 

It's too late. The polarizing rays have reached food allergies and there's no going back. Education only makes 'em meaner.

Save yourselves! 

*@ZAP!$%

Follow me on Facebook or Twitter  

To the "Food Allergies Are Fake" Friend or Family Member

Hello:

You don't know me, but your friend or family member has asked that I write to you on their behalf.

I'm the Food Allergy Bitch. I say things about food allergies that other people might have difficulty saying directly. In this case, the thing that they're having trouble saying directly is that you're being an ass.

See, they don't want to cut you out of their life. They like you enough that they're giving things one more try, by handing you this letter. They want to co-exist peacefully. But you're making that difficult, which is why I'm writing to you.

We both know food allergies are not fake. Obviously, if you've paid any attention over the last little while, you know the child in question has a real health issue. You know they get very, very sick after eating even a little bit of the food to which they are allergic. You know that they carry rescue medications and can end up in the hospital, or even die.

However...you are still playing control games. Maybe you're doing a half-assed job of preparing foods, saving labels or accommodating your friend/family member when they bring alternate foods for their child. Maybe you refuse to put away the peanuts or other problematic foods. Maybe you make jokes and snide comments about wimpy kids, or "getting along in the real world." Maybe you've even hidden allergic ingredients in a food "just to see what would happen", or encouraged your own children to bully and exclude this child. You've added to the burden, again and again. 

Why are you doing this? 

Perhaps you feel that this adult is trying to control you through food allergies, by dictating what you can and can't serve in your own house. Or perhaps you have an issue with illness in general and equate it with weakness.

BUT...you're an adult. You should be able to rise above these things when a child is involved. So I ask you again...why are you doing this?

I know it's difficult. I live food allergies all day, every day. If you don't feel up to the challenge of preparing safe foods, I understand! Your friend or family member is not asking you to DO things for him or her. He/she is asking that you REFRAIN from doing certain things:

• Offering unsafe foods in situations where the risk is increased (foods left out with a small child, open allergens like a bowl of peanuts, insisting on having peanut satay on your menu, etc.)

• Teasing, bullying or making snide comments about the reality or severity of food allergies, especially directly to the child

• Talking behind their back about the issue

Really - that's all they need. They just need you to remain emotionally neutral and perhaps think a little bit in advance about the menu. Ask them what they need. You may be surprised at how easy it really is.

You're an adult. There's a child involved. Can you please suspend whatever it is that makes you see this as some kind of social affront or challenge and just support this child? Please?

Thank you for listening.

The Food Allergy Bitch


Follow me on Facebook or Twitter  for updates!