My Spectacular Advocacy Fail

Do you ever feel like the one that sticks out? I do, frequently. I've done my best to make the most of bad situations, but when it's my child that is the one who "sticks out," I don't always react in the most rational, thought-out way.

Do you ever feel like the on that sticks out? I do, frequently. I’ve done my best to make the most of bad situations, but when it’s my child that is the one who “sticks out,” I don’t always react in the most rational, thought-out way.

A man approached me at an event, not an IBD-related one, and asked me what everyone was doing. The event was a walk at a local beach and it happened to be for food allergy awareness.

“This is a walk to raise funds and awareness of food allergy.”

“That’s strange,” he said to me, and made a face of disbelief.

“Why is that strange?” I said.

“Because you think it would be cancer or Alzheimer’s or something.”

Here’s Where I Went Wrong

My blood pressure spiked and I could find no appropriate words. I told him that there are many needs for funds and walked away. I should have taken that moment to advocate, to tell him that food allergies affect 1 in 13 children today, and that all aspects of their life are touched by this problem. It affects their growth, both physical and social. It kills children. That we need funds because we need to find out why this is happening and how to fix it. Food allergies are one area that we are getting so close to effective treatments.

In short, I did not have my “elevator speech” ready for this particular situation and it came back to bite me in the ass. I reacted with anger because I have encountered this so often in regards to food allergies. People really don’t understand what a true allergy can do, that eating the wrong food for some people in my family results in vomiting, diarrhea, or worse. That they must then take time from school or work to recover. And that it gets worse with every exposure.

Other people don’t believe food allergies are “real.” Have you ever seen a one-year-old child child develop hives after exposure to the smallest amount of the food they are allergic to? I have. Have you ever seen a child throw up all day—on a holiday—after accidentally being given an allergen? I have. Have you had to be “that parent” who must insist that foods be kept out of the classroom and that craft materials not include potential allergens? I am that parent. These are not psychosomatic reactions. This is not attention-seeking. This is not faking. All of this went through my head and tied my tongue. How DARE anyone intimate a condition that affects MY CHILD isn’t deserving of attention and funding?

Why My Failure Here Matters

The man who approached me appeared to be a boomer, of that generation that sometimes insists “we didn’t have [insert condition here] in my day!” And yes, it’s true that food allergies, and even IBD, have increased in the years since our parents were children.

Why? We don’t know. Part of the situation may be that these conditions, and others, including celiac sprue, are now being diagnosed properly. They were always there, but people suffered without medical care or never received a diagnosis.

The rest is due to something we haven’t figured out yet, because when we do we can try to prevent the conditions that are affecting our children. Food allergies and IBD run in the family, I do everything I can to prevent them in my children. I did everything “right”—I ate what the specialists told me to eat, didn’t eat what they told me to not to eat, breastfed forever, and food allergies still affected us.

We Did Not “Make Ourselves Sick”

In other words—I did nothing to cause this. I also did nothing to cause my own IBD. And neither did anyone else. Suggesting otherwise is completely ludicrous. I think some people have difficulty with the idea that a disease can strike without warning: without a family history, without doing something harmful like smoking or drinking too much or eating unhealthy foods. That we haven’t figured out yet why it happens (although we have ideas) and therefore can do nothing to stop it. That’s a scary thought. Easier to blame the sick person and move on rather than give attention and thought to a complex situation.

I’m working on my food allergy awareness elevator speech. We have so much work to do and I failed to do my part on that particular day. It won’t happen again.

Sources:

Jackson K, Howie LD, Akinbami LJ. “Trends in Allergic Conditions among Children: United States, 1997-2011.National Center for Health Statistics Data Brief. 2013.

Kaplan GG. “The global burden of IBD: from 2015 to 2025.Nat Rev Gastroenterol Hepatol. 2015 Dec;12(12):720-7. doi: 10.1038/nrgastro.2015.150. Epub 2015 Sep 1.

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