Interview: No it’s not contagious!

How does it feel to be a 17-year-old girl with 74 (in words: seventy-four) food allergies? What is day at school like for her? Do cosmetics help with the rash on her face? What can one eat at parties? How does her family support her? ECARF met Jessi, a grammar school student in Berlin. We spoke to her about her life as a teenager with food allergies.

ECARF: Can you tell us a little bit about yourself?

J: My name is Jessi, I am seventeen years old and I struggle with my allergies. I have 74 allergies to food. Whenever I eat something I am allergic to I get a reaction. Sometimes they are different depending on what exactly I have eaten. It’s usually a rash on my skin, like red dots, especially on my arms and legs. Sometimes I get it on my face, which is kind of problematic because you can always cover your legs or arms but you cannot cover your face in any way. So if I get something on my nose or my cheek I find it very annoying.

ECARF: What do you do then? Stay at home?

J: There is nothing that I could really do. There is no such cream which could actually help me to get rid of it within a few days. I just have to wait a week or two and then it will be gone. I use a cream which is against irritations of the skin but it works very slowly. So I have to wait a week or two either way. I usually just go to school. I try to ignore it because I don’t feel unwell. I just know that I have something on my face and cannot cover it. Of course I cannot put on make-up. So I just think of it as a break for my skin to detox.

 ECARF: Do your friends make comments?

J: Sometimes they ask me: “What’s that on your skin?” Last time when I got my allergy, it was on my arms. One of my friends looked at it. She was unfamiliar with allergies and asked “Can I get it, if I touch it?”. I said “No, no, no, it’s not contagious”. So sometimes people actually do not know what an allergy reaction looks like. I am kind of self-confident and don’t really care what people think. I mean it’s not anything contagious but some people might be afraid to go to the swimming pool when they see me, for example.

ECARF: Do you remember when you started having allergic reactions?

J: I had allergic reactions to food since the day I started eating, at the age of two or three. When I was  seven I started being on a diet and I was on it for one year and a half. It was the strictest diet I had to do because I couldn’t eat any gluten, I couldn’t drink milk, I couldn’t eat eggs and a lot of products which we eat and drink in everyday life. I tried to eat the gluten-free bread but it tasted not even similar to the normal bread. I didn’t like it from the beginning. So it was very hard for me to stick to the diet. Whenever I went to school and I saw people at my age eating their sandwiches with Nutella or just a normal sandwich I was so jealous! And then I looked in my bag and saw the corn bread with ham or something. I wasn’t happy about that but I guess that I got used to it and actually after this one year and a half I was feeling much better. Then we went to the doctor and he said “Let’s try and see where we are with your allergy.” So I stopped being on a diet and started to carefully eat food that I couldn’t before. It actually worked quite well because although I was getting allergic reactions they weren’t that strong anymore. I survived for a couple of years, until last summer. During a vacation in Sri Lanka with my family I had a strong reaction and after we have come back home my allergy was getting stronger again. I was tested and it said that I am allergic to everything that I had been allergic to before. So after ten years of not being on a diet I had to start the diet again.

ECARF: What do you avoid eating now?

J: Same as before: Gluten, wheat, milk, eggs. Because they are main products it is very hard to avoid them. And there are many more. Sometimes there are situations when I would really like to eat something I am not supposed to. It’s those days when you feel like eating pizza or noodles and then I just have to say ‘no’. If I could make myself not allergic to one product it would be gluten. That’s the most annoying allergen, I think.

ECARF: Do you make exceptions from your diet sometimes?

J: Yes, I do. My life would be very sad if I couldn’t eat some of the non-diet food once in a while. I do know how chocolate tastes, I do know how bread tastes and obviously I miss that kind of food. I cannot make exceptions too often but sometimes when I stay in Berlin and I go out with my friends then I actually order spaghetti or pizza. But usually when I am at a restaurant I find it the easiest to just get a salad. Then I can simply take stuff out which I cannot eat. Luckily, I can eat most vegetables. Tomatoes are the only fruit which I usually eat although I am allergic to it. I love tomatoes!

Also during Christmas and Easter time I cheat on my diet. Then I eat everything. So that’s the time when I get my worst allergies because everyday over these holidays I eat something that I am allergic to. I know I’m making a big exception there but it’s Christmas time, it’s Easter time and I want to eat normal food, eat some cake.

ECARF: How does your family support you?

J: Most importantly, they don’t eat things that I am allergic to. Even though my dad and my younger sister do not have a gluten intolerance they started eating the gluten-free bread which my mum bakes for us. My mum, like me, has a gluten intolerance. So does my brother. Overall, he is the most allergic in my family with 76 allergies, two more than I have. So everyone is on a diet regardless of their allergies.

ECARF: How do you feel during classes?

J: Because of my allergy I’m sometimes very exhausted and tired during classes. Maybe it’s because of the fact that I cannot eat a lot of food. But in the end I think it’s because of the allergic reactions. And once I actually did fall asleep during class.

The fact that my school is allergy-friendly is very important because it would be very difficult for me to deal with my allergies otherwise. I’m very happy that there is always a lunch option that I can eat. I have no problems with my diet at school and I see that people here are familiar with allergies and more aware about what it implies. In other schools they just don’t talk about that kind of problem.

ECARF: What would you recommend to someone who is hosting a party and has allergic friends?

It really depends who is inviting me and how well they know my allergies. I went to a birthday party at my friend’s house and she had actually prepared a salad that she knew I could eat. She told me the ingredients and then she explained everything else on the table. “Here’s chicken, here’s pork. I don’t know if you can eat that, I am just telling you.” That was very nice.

In general, it would be great if there was just something to eat for a person with allergies. Or if the party host takes the time to show you the food and tell you the ingredients.

ECARF: Is there anything that people really should know?

J: Allergies are not a real sickness and it’s not anything that people should be worried about. They should just get used to it and take it like let’s say a weakness. It just doesn’t make sense to waste your time on complaining and feeling bad about yourself, because it’s not going to change. And when I am really sad about my allergies I go and eat something that I shouldn’t eat. It’s not good for my allergy but it sure is for my mind.

Interview: Matthias Colli