"I talked to your cousin Donna last night. I told her she should call you. She's into a lot of the same stuff you're into."
"Um...what stuff would that be, Mom?"
"You know...all that stuff about the bees and GMOs and vaccines, honey. I told her you knew a lot about it and would be happy to talk with her."
YIKES! Since when did having a kid with food allergies automatically qualify me for the willing-to-accept-every-random-theory club?
As you guys know, I do a lot of reading and I have come to think there may be something to some of the alternative theories out there, particularly around pesticides and antibiotics killing off symbiotic gut bacteria. But I've also spent 25 years of my career firmly submerged in Western medicine and my mother knows this. So what the heck happened here?
Eosinophilic esophagitis is a very real condition. However, the primary symptoms of the disease are difficulty swallowing and reflux, not headaches and fatigue. The treatment for EoE is indeed to remove foods from one's diet. But the strong impression that was left behind by this article (and which is reflected in the polarized, scathing comments section) is that allergy sufferers are crazy hypochondriacs willing to accept any theory and that allergies aren't real.Shetterly is the protagonist of her article, and the plight she faced that spurred her to write this story is truly sad. She was plagued for years by a variety of debilitating symptoms from headaches to fatigue to hands frozen into claws by pain. She went from one doctor to another, but no cause was identified and no cure found.On the recommendation of her physician, she went to see Maine allergist Paris Mansmann. Shetterly showed symptoms, he concluded, of eosinophilic disorder—a multisystemic condition in which white blood cells overproduce in response to allergens. These abundant cells release enzymes that break down proteins, which in turn damage the esophagus, airways, or other organs. But what was causing the reaction? Mansmann opined that Shetterly’s condition could be the result of eating genetically modified (GMO) corn. According to Shetterly, the Maine physician suggested she strip all corn from her diet.
I've talked in other columns about how food allergies have been polarized. One of my earliest columns was about how popular entertainment likes to portray kids with allergies as wusses. But how in the world did food allergies completely devolve from a medical condition to the place we're in today? Is it possible to rationally discuss the possible causes of food allergies without being immediately branded a conspiracy theorist?
Contempt. That's the only word that describes the current state of food allergy acceptance. Education actually seems to be resulting in less acceptance, not more.
We're getting a strong societal message here. Don't talk about food allergies. Don't read about them. Don't consider the causes. Minimize them as much as possible. It's a political issue. It's a boring issue. No one is going to believe you anyway.
How do our kids make sense of all this? They hide their allergies. THIS is why our teens are so much less safe than they could be. Don't believe me? Watch Louis CK's bit. He nails the contempt.
Of course they would never hide their allergies and take big risks.
But maybe.
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I was dx anaphylactic to pn/tn when I was 6. By middle school, I had people throwing peanuts at me at lunchtime so I wouldn't be able to eat my lunch. No one took this seriously unless my parents went in and even then, it still wasn't taken seriously until my parents escalated it to the point of having to raise hell. This was 20 years ago.
ReplyDeleteTrust me, there are times when you DO NOT want to tell people you're allergic. The risk of eating an allergen is far lower than the risk of telling others your Achilles heel. Teens know this. Even adults are subject to this. And as we get more people getting into their teens and adult years with this "invisible" disability, we're going to have to have this conversation more and more, for the safety of everyone. I get tired of people saying someone with any kind of special need--whether it's having fluids on hand to take pills at specific times, or not eating certain foods--is a "special snowflake." We don't WANT this. So stop acting like we enjoy it.
I think education is so important, BUT when we come across as crazy people asking for accommodations that go over the top it causes people to view us paranoid over-reactors. That allergies are just the "disease of the day". Allergies are very real and very serious. My son is 13 and I worry a bit more now that he is starting those teenage years. Risks need to be minimized and our kids need to be kept safe. We need to be careful how we go about it, so that we're not actually hurting the cause instead of helping it.
ReplyDeleteWow, what a terrific post! I was right there with you from beginning to end. To conflate all that stuff with allergies... yeeesh.
ReplyDelete**Groan** That Louis CK clip . . . oh man . . . made me feel really queasy, because he totally nailed the contempt (and the audience did a great job backing him up). Non-allergist medical professionals can totally perpetuate this contempt, too. I'm all for moderation and targeted risk management, but I'm dealing with an E.R. doc at school who can't quite fathom why *any* precautions are necessary. The teachers want to have the kids make West African peanut soup for educational purposes? Why the heck not? Doc's reasoning: Studies show casual contact with PB doesn't cause systemic reactions. And besides, *only* about 200 people die every year. Hence, not a big deal. Chill out, hysterical FA mom . . . it's all in your head! http://en.wikipedia.org/wiki/Hysteria
ReplyDeleteYou mentioned that education seems to result in less acceptance of food allergies and I'm just wondering if you've come across any studies or reports on this. I wholeheartedly agree with you and I believe that the more people hear about allergies the less likely they're inclined to help. Or maybe they just don't believe it. A recent incident in our neighbourhood revealed to me that most of my friends (or ones I thought were my friends) are not on board at all about the food allergy issue and in fact do not understand the concerns I have for the safety of my child. It makes me wonder that if my friends didn't get it and they know me, then strangers wouldn't get it either. It scares the hell out of me.
ReplyDeleteMost of the reading I've been doing over the last year has been about the issue of polarization. It's hard to believe a medical issue could be polarized, but I've come to believe that people's opinions about food allergies are influenced by all kinds of other things that have nothing to do with our children's medical conditions.
ReplyDeleteIf you look at this post:
http://foodallergybitch.blogspot.com/2012/06/stand-back-everyone-food-allergies-are.html
you'll see a link to a study that indicates 50% of the population believes food allergies are exaggerated. (The post right after that one is also about polarization.)
You're exactly right though...one you know this, it makes it harder to trust people. You never know which one is secretly rejecting the concept of food allergies.
Okay, so I've read both posts and I think your alternative naming convention for food allergies is fantastic. I can't tell you how many times I've said my daughter is deathly allergic to milk and had someone say "Oh yeah I know what you mean, my sister is lactose intolerant" or the famous "Yes, I can't have milk too because it gives me a headache". But my problem is with people who know for a fact that my daughter has landed in the hospital at least 3 times in the past 3 years due to cross contamination with milk. And we're talking serious symptoms like swollen limbs and face, vomiting and hives. I'm told by the allergist that she is the most severe they have seen in our city. And my supposed friends know this, but it doesn't sink in. It's like there is some sort of mental wall. The recent incident I mentioned earlier has the entire neighbourhood vilifying me. For the past week I've been bashed online and my friends (ex-friends now) think there is something wrong with my head. How did they phrase it now... "We're worried about you. You're not seeing things right. You need to relax." I am utterly shocked by their reaction and absolutely terrified of making any new friends now. I am not sure who to trust. I keep thinking every new person I meet is a total idiot and will disappoint me again. How do you get past that?
ReplyDeleteWell...to a degree, you don't. Unfortunately, I've learned that food allergies are something that are often not compatible with casual neighborhood friendships. Go back and read the beginning of this column and you'll see why I started writing in the first place - overwhelming frustration with family and friends. But, as time has gone on, I've started to ask *why* people do what they do. It's really too long for a response here, but I'll give you the main ones:
ReplyDelete- Food allergies get tied up with all sorts of other social/political issues. Kids are socialized to equate food allergy = wimpy. Republicans and libertarians see food allergies as an encroachment on personal rights (remember Sarah Palin and the cookies?)
- In general, there's a reject of "special snowflake" status for any child, even those children who really need that status. Food allergies are invisible, so it's especially easy to disbelieve them.
- Mothers in our community DO exaggerate. Unfortunately, many other moms have come to see food allergies as an attention-seeking mechanism. I realize we are in a Catch-22: if we don't say they're serious, our kids may be undertreated. If we *do* say they're serious, people may ignore us because they assume we're exaggerating.
- People lie about food allergies. 24% of the population believes they have one, where realistically it's only 1-2% of adults and 6-8% of children. There is confusion about the term in general.
I don't know how to combat this, other than to not talk about it except at times I'm asking them to do something (which are very few). You can try giving them my letter, which was written for exactly this situation:
http://foodallergybitch.blogspot.com/2012/06/to-food-allergies-are-fake-friend-or.html
You can also engage your husband in the fight. Make sure you socialize together and that he is there to support you and defend you if/when the issue comes up.
I don't know how effective it is, but if they are talking about you behind your back in a public forum like Facebook, try reporting them for bullying. Perhaps it will be a wake-up call if they're suspended for a few days. In the meantime, I hope you will look for supportive friends! Do you have a local food allergy support group?
AllergyMom, I'm sorry this is so long, but I do want to say one other thing. While I've given you the reasons above for why I believe allergies can be polarized and people can bully, it doesn't sound from what your saying like your friends are necessarily fully in this category. They may just be trying to say to you that they think your anxiety is out of control.
ReplyDeleteI am no stranger to anxiety. Any of us who have witnessed a severe reaction and made that hospital trip have a hard time coming back from the PTSD. But it's not good for you or for your child to live at that ratcheted-up level every day, all day, and that's what your friends may be trying to say, even though it's coming across as critical.
Study after study has shown that food allergies have one of the highest levels of stress for the parent, more than cystic fibrosis, more than diabetes. I really think every parent of an FA child could benefit from therapy to help cope with the stress. It might also help you to untangle here whether your interpretation of their actions as rejection is really objective.
I do know that food allergies often creates a river between friendships. No matter what we say or how much we education, people literally cannot picture what it's like. But I also think it's important for us to stop having that expectation. If they're good friends, other than this one area, you may want to give it more thought before you burn the bridge fully.
P.S. If you want me to post this on my Facebook page so you can get other opinions, let me know.
Thanks, I've sent you a message on facebook to elaborate.
ReplyDelete