A little while ago, I received a request from Heather S. asking the following:
I’m doing a presentation in my sociology class about the social impact and quality of life of food allergies on children, teens, and young adults. I was wondering if you could put on the website a place where people could talk about the impact FA have on them and/or their children? I’m also looking for how it impacts the family members and close friends of the FA individual.
When I asked for more details, she gave me her story to share:
I was diagnosed with allergies of all kinds and asthma at the age of five months. My food allergies then consisted of peanuts, fish, melons of all kinds, green peas, and strawberries. Not a large list, but enough that my parents were diligent. We lived in Florida at the time, so the fish allergy was especially frightening. I was able to eat at most restaurants. I thought it was easy, but my parents did not. They were constantly protecting me, worrying what was in the packaged food, and what was in the food another child brought into class.
Then around seven years old, I went into oral testing for food allergies. The new allergist was trying to figure out what foods I was actually allergic to. I had already been through the skin tests, and it was very painful. I remember crying the entire time. This was nothing compared to not eating certain foods for two weeks at a time. I had to stop eating soy. I hated it. I couldn’t eat the Burger King my friends ate at school. This was during the 1990s, and there were no appetizing soy free foods. We cooked everything at home. Then I had to stay away from citrus for two weeks. I was surrounded by oranges, grapefruits, even tangerines, all in our backyard growing from trees. It was hard.
I went through all of that without a complaint. It was hard, but I knew it would help my health. I knew all about my health. And I knew what I looked like to others not in my immediate family.
To relatives, I was the weird child. Constantly taking medication and on a pill to combat this reaction or this infection. I couldn’t eat certain things. Mom cooked all of our food during family gatherings, so I was for the most part safe.
To the school, I was a liability. In elementary school, I was not allowed to carry my own inhaler. I’d had it since I was small, so I knew how to use it. Not carrying it was scary, and embarrassing. Every time I needed it and before PE, I had to go to the principal’s office and take the two puffs. The kids laughed at me.
Then there were summer camps. I couldn’t go unless my mother came, like in Girl Scout camp. She has an inhaler she has to take twice a day, and an emergency inhaler? She can’t come. She’s a liability. She can’t eat certain foods or she’ll die? She can’t come. She’s a liability. I eventually gave up on going to summer camp.
The one camp I could go to other than Girl Scouts, was at Boca Ciega. It’s located just outside Orlando. Children with various disabilities or chronic disorders can go and be themselves. And from all over the country. There’s Diabetes camp, Cancer camp, even AIDS camp. Food allergies? No problem. There’s a variety of options for them to choose from at lunch. Need an inhaler, nebulizer treatment, or any kind of pills? No problem. We bring them to the cabins every morning to administer. Can’t stand heat without getting sick? No problem. We have air conditioned cabins and running water. It’s an incredible experience every child with medical conditions should have.
In 2001, my family moved to Illinois. The food allergy education in Central Illinois was incredibly lacking. I went from having a team of experts making sure every week I was doing fine, to a pediatrician who just handed out medication.
In school, I did not tell the nurse I carried my own inhaler. I wanted to carry it myself. The embarrassment peaked during high school. The school decided I had to sit at a peanut free table. Away from my friends. With people I did not know. I eventually left the peanut free table to go sit with my friends. The nurse also did not know much about food allergies.
After high school, I developed allergies to wheat, dairy, and a life threatening allergy to tomato. My childhood food allergies were nothing compared to my new ones. The other ones I could avoid completely when eating out. These new ones changed my world, and the way I look at the food industry.
I can’t eat pizza. I can’t go get burgers with friends. I can’t go to that delicious new Thai place everyone’s talking about. And I can’t go get tacos or a sub from Quiznos with my best friend. Yes, I can cook at home. I do that a lot. I know exactly what goes into my food. I have not had a reaction from when I cook at home. No cross contamination even when my parents have fish or chili. My food is cooked first, or some of the ground beef is set aside before mom puts any into the tomato sauce. But when I do eat out on that rare occasion, I have the anxiety that the chef may cook my chicken on the same grill as the fish. Or that the cut tomato will just be picked out of my salad. Then when I get the food, I have to inspect it for any clue that they didn’t do what I told them to do.
When eating out, I would give the waiter my chef card, which would have all my food allergies. I’ve gotten reactions such as laughing, calling me names, and condescending tones. Then, when the waiter comes with my food, if the waiter gave me any of the above reactions to my card, there’s a 90% chance I go into a reaction and have to go to the hospital for most of the night. Sometimes it’s innocent ignorance. Other times, it’s stubbornness and them not taking my condition seriously.
I was at a restaurant last night. I had so many good experiences at this place. Last night irked me. I was with my family. Before, I’d been allowed a freshly made, dairy free pesto sauce on my gluten free pasta. Last night, I would point out a dish, and the guy would say ‘That has dairy’ or ‘That has tomato’. Well, yes I know it has that, but the times before, the chef had talked about what he wanted to do to make it safe. I had to ask this time, not have it suggested. Then, when my food came out, it had some oil on it and no broccoli, like the menu had said. And I was promised gluten free rolls. They never came. This was a manager, not a chef, and I was treated like a waste of time, not like a paying customer. I don’t know if I want to go back.
I’m writing this in response to a presentation I have been assigned for my sociology class. The presentation is on the quality of life for individuals with food allergies. I would like to know the impact your food allergies have had on you and/or your child. How do food allergies impact going out to eat, going to birthday parties, having lunch at school, etc. I am looking for how food allergies impact both the individual, as well as family members.
So there you have it – Heather’s story. Now she’d like to hear some of your stories that will help her expand awareness. I’m hoping she’ll share the presentation with us when it’s completed too!
PLEASE CLICK COMMENTS OR REPLY BELOW TO ADD YOUR STORY! If you would rather send it privately to Heather, feel free to pass it through AllergyEats at firstname.lastname@example.org and we will keep it confidential. I look forward to reading all of your stories and I knew Heather is very appreciative for the support!
After you’ve done that, if you’ve dined out recently, please remember to rate your experience on our core site at www.allergyeats.com. Rating a restaurant takes just a minute, but each new one increases the value of AllergyEats for our entire food allergy and intolerance community!