Tuesday, January 31, 2012

Tigers In Our Midst: Groupthink, Anxiety and Allergy Communities

When my son was around four, he started developing "mystery" reactions to foods he had eaten all his life. My husband and I were absolutely panicked; in addition to the stress of the reactions, many of the suspect foods were staples in his somewhat-limited diet.

We pursued allergy testing, but the doctors' conclusion was something called "idiopathic anaphylaxis", meaning reactions with no known cause. They told us it might be food, but it also might be exercise...or something environmental...or a combination of things. So, basically, go forth and live your life with the snarling tiger of an out-of-the-blue reaction always focused on your shoulder blades. Pounce!

Understandably, it was at this point I sought out an on-line help community, thinking that someone else must have gone through this. Luckily, some of you had. While no one had been through our particular flavor of crazy, you gave me enough tips and experiences that we finally did identify what was going on: an allergy to a seed-pod protein found in almost the entire legume family. Problem solved! Reactions averted!

However, there was a price.

I stuck around the community, on and off, for years. Eventually, I ended up running it for three years. What that meant from a practical perspective is that I was there every day, reading as many posts as possible to identify potential problems/trolls.

Little by little, as I spend more and more time there, I felt the eyes of a different tiger drilling into my shoulder blades: groupthink anxiety. Some of you may know what I'm talking about:
  • What do you mean you give Benedryl at the beginning of a reaction? Epi-Pen, right away, no matter what!
  • Your child is having so many reactions! Maybe you're taking too many chances.
And, always underneath every surface-helpful but ultimately-judgmental post:
  • What if you wait too long/take a chance/do something wrong and your child dies?
I've read the list of everyone who ever died from a food allergy. I've emailed with the parent visitors whose children passed away. I'm not saying this is a zero-risk situation.

However, it got to the point where I was questioning whether I was a bad parent to allow my child to attend a sleepover. Questioning whether I should be forcing the school (ha!) to institute a peanut ban, even though my son had never had a contact reaction. Whether touching the outside wrapper of a peanut-containing candy bar was really a risk. And, through every discussion, ran the tiger of what if you do something wrong and your child dies? The groupthink always gravitated toward the most extreme comfort zone and constant immersion made it very hard to keep my own boundaries.

Our on-line communities serve an information and support purpose that's very difficult to find in the physical world. However, for me, it also reinforced anxiety in a way that was not healthy.

It all came to a head when we started re-introducing some of those foods to my son to which he had showed an allergy at age four. The inevitable consequence of food challenges and re-introductions is symptoms. Itchy mouth. Funny feeling in the throat. "Push through it," said our doctor. My God, what are you doing, give a fricking Epi-Pen and stop this high-risk behavior before your kid is another statistic was the voice I heard in my head.

I quit the community over a year ago in the hopes of taming the anxiety tiger. However, I still hear its voice every time I hand my kid a food containing baked milk (which we were cleared for last summer). It's what makes me hesitate to keep the dosage consistent. It's what makes me obsessively worry every time he coughs or clears his throat after he eats it.

So...I'm back to where we were in preschool, feeling the eyes from the tiger of random reactions (this time from problem foods I'm choosing to give him) drilling into the back of my shoulder blades. Facing off with Random-Reaction Tiger is Constant-Anxiety Tiger, who I've knowingly fed for over 10 years in exchange for invaluable information.

And right in the middle is my son, who watches my face each time I give him his milk-containing food. And each time he considers going out with friends...or asking a girl to a dance...or trying to figure out how college is going to work for him. He sees the tigers. He's anxious and afraid and really, really angry, and I don't blame him one bit.

Tigers suck.