The food allergy world is a bit like The Twilight Zone. Every episode is different but has the same suspenseful theme. What will the shocking plot twist be today? … The twist that will leave us awake in the night, heart pounding as we remember the episode.
Will the hero turn out to be the villain?
Will the good doctor be revealed as incompetent, if not dangerous?
Will trusted friends or family serve my son food with allergens the moment my back is turned?
Like many parents, we walked through the baptism-by-fire portal into the food allergy world. Many of the lessons learned came from trial and error, which were followed swiftly by waves of guilt caused by failing to predict situations that no one could have foreseen.
It was a relief when our son was diagnosed with multiple food allergies. We had at least identified the problem and could fight against it. After drastically altering his diet, he began eating better within two days! We were so thrilled! We didn’t know that the true challenge of keeping him healthy went far beyond our own capabilities.
Well-meaning adults frequently tried to give our son foods he couldn’t have, even after I clearly explained that he brought his own food with him. Just don’t give him anything and he will be fine.
Simple, right? No. They couldn’t help themselves.
What I learned was that people meant well. They wanted our son to be included. Their hearts were in the right place. To solve the problem, I began to stay with my son at gatherings like birthday parties and school events. Then no one had to be educated. I didn’t have to spend time explaining allergies, reactions or how to use an Epi-pen. Problem solved… or so I thought.
Here’s the plot twist I never saw coming. The episode that keeps me up at night, wishing I could shake my head and say, “it’s only a story.” This is what moves the story from The Twilight Zone to The Real World.
All our collective attempts to blend in quietly may have helped to create a risky and unintended consequence… People don’t understand us, and we suffer alone.
This is evidenced by the general acceptance of the outright bullying of children with food allergies, and their parents. They have become the only disabled group who can be made fun of openly.
Unfortunately, people are still thrown off airplanes for disclosing food allergies, and not allowed to pre-board in order to wipe down seats. Social media adds fuel to the fire when memes are shared that downplay the seriousness of allergies, making us sound like whiny complainers. These memes are shared by hundreds of people, with comments racking up that say, “haha” and “perfect.” It’s an environment of complete disrespect, but there may be a way to stop it from growing.
A woman approached me once because she saw a copy of Allergic Living magazine in my bag. She shared with me that her son had severe nut allergies, as did mine. Even as strangers, we had a supportive, encouraging conversation that day. We didn’t know each other, but we knew each other. We knew the journey, the fears, the struggles. Allergy parents support each other, and that’s our strength.
As heavy as food allergies are- and they are heavy at times, I believe it will help our cause to incorporate them into the culture. We have to find ways to bring them into the world. Even if that simply means offering encouragement to someone else who speaks up about food allergies, or constructively commenting under a meme that depicts people with food allergies as less than. Staying quiet hasn’t helped our cause, so let’s try speaking out.
As we act and react, our children are listening and watching. If we hide and show fear of speaking openly, so will they. If we fail to look people in the eye as we ask about ingredients in a restaurant, so will they. Our only option is to be courageous and confident as we navigate our way in a world that many don’t understand.
We have to stop hiding in our houses, sitting silently on airplanes and tiptoeing around events so people don’t know we’re different. The more of us that stand in the light, the more power we have.
As worried as many of us are, it is not useful to let our fear get the best of us. It's true that we wish this didn't happen to us, or our kids, or our family, or our friends. But it did. People shouldn’t treat us or our children as less than, but sometimes it happens. We have to accept what is and look for ways to improve the situation in a positive way.
So speak out thoughtfully (choose your words carefully as to not place blame). Share your story with friends in a constructive way (explain what you hope to accomplish). Create your own positive memes (to combat the negative ones). Start a blog to document your journey if it’s easier than speaking out vocally.
The more we constructively share our experiences in and out of the food allergy community, the more support we can garner. People on the outside don’t have the chance to understand or support us if they don’t know what we are going through.
Let’s make the next plot twist that we not only survived, we thrived, and accomplished something together.
It is my hope that all of us in the allergy community can use our platform, whatever it may be, to step into the light and spread food allergy awareness. The more people are aware, the better chance we have of acceptance and inclusion.
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