Please Treat My Invisible Disability with Respect
This article was originally published on the Huffington Post blog on April 15, 2016.
Just by looking at me you'd never know I have a disability. You wouldn't know that it's potentially fatal if not treated immediately, or that it's caused me life-altering anxiety for years. You wouldn't realize that I have experienced bullying as a result of it, or that it's often belittled by people who don't understand it.
You would never know the amount of research my parents had to do when I was first diagnosed, or how scary it was for them to not know why their baby was covered in eczema and constantly ill. You wouldn't know that although there's treatment there is no cure.
I have anaphylactic allergies, a condition with no outward signs but that alters or affects nearly every facet of my life.
I am allergic to dairy, nuts and all legumes, including peanuts and soy protein. As a kid that list was much longer and included chicken, egg and pear.
Having an invisible disability means that I hear a lot of social commentary about it without others realizing that I'm part of that group, like being a fly on the wall while fully present. In the past I had tried so hard to conceal the fact that I was different.
In high school I would go to great lengths to cover it up for fear of being patronized or having anyone think I was a "loser." If there was a situation that involved food I was unsure about I would behave the same way many teens with an eating disorder do. I'd move food around on my plate, hide it, throw it out on the sly or claim I was running late to skip the meal portion of the outing. Sometimes I just pretended I was full and then hastily scarfed down a "safe" sandwich from my purse in a washroom stall.
The physical toll is immediate: throat restriction, swelling of the face and hands, vomiting, increased heart rate, faintness.
In elementary school my mom played a greater role in my anaphylaxis prevention (those with allergies are constantly aiming to prevent a reaction). She handled my school events, talked with other moms and teachers, packed separate snacks for me, and accompanied my class on every class trip.
She even had slices of safe birthday cake individually frozen so that she could send one with me to my friends' birthday parties. She made it easier for me to fit in. In school I had to sit on my own during meal times until around the Grade 3 to avoid cross-contamination. My mom arranged with the custodian to have him wipe down all surfaces after lunch. But as I grew up I had to learn to handle it independently.
I've had six anaphylactic reactions requiring epinephrine, hospital visits, and bed rest (and countless less-severe reactions requiring antihistamines). They have all happened at inconvenient times and necessitated others to drop everything and come to my aid. They have all required days of rest afterwards followed by inability to eat and frequent anxiety attacks.
The physical toll is immediate: throat restriction, swelling of the face and hands, vomiting, increased heart rate, faintness. But it also extends past that day -- black eyes, faintness, exhaustion, sensitive stomach, headaches and heightened anxiety.
I've been present for a lot of discussions on whether or not allergens should be banned in school and I've heard a lot of hurtful statements made about people with allergies on TV, on social media and in my everyday life. Some have suggested it's too inconvenient for parents not to pack their kid's favourite lunch because they are a picky eater. Others have suggested, albeit half-jokingly, that allergic kids go to a different school or be in a separate class.
As a kid I remember watching a comedian on TV complaining about not being able to pack his son a peanut butter sandwich for lunch. He said it in such a way that it sounded like the most outlandish, high-maintenance thing. As the audience laughed, I sat there stone-faced as though I had just heard a bully making fun of me in the school yard.
I often wonder if those same people saw someone in a wheelchair, would they tell them they'd "just die" if they couldn't walk?
Statements like this contribute to my fear of always inconveniencing everyone with my special needs. The language around allergies has to change.
It's so common for people who first learn of my allergies to say things like, "If I couldn't have ice cream I would die," or "Wow, I feel so sorry for you. At least you don't know what you're missing." And I often wonder if those same people saw someone in a wheelchair, would they tell them they'd "just die" if they couldn't walk?
Why is this language not seen as rude and patronizing? I've worked very hard on myself to change my attitude about my allergies, but I think there is also a need for society to change its, as well.
Support for this cause has been growing, and allergen-free food companies, bloggers, writers and even organizations promoting inclusivity -- such as the Teal Pumpkin Project -- are gaining popularity. I'm now the author and food photographer of an allergen-free cookbook for kids, Allergen-Free Desserts to Delight Your Taste Buds, and I run a website called Everyday Allergen-Free where I talk about all things related to allergies.
Recently I had the good fortune of connecting with myAllergy, a tech start-up from the U.K. who has the same goal in mind. Together we're spreading allergy awareness one personal story at a time through the #myallergystories blog campaign.