Interview with Genevieve Fraser: Growing up with a Peanut Allergy

Working with people diagnosed with food allergies and Celiac disease has opened my eyes to the world around me. Prior to this, the only person I knew with severe food allergies was a younger cousin of mine whom I spend very little time with.  But, when you start paying attention, you figure out there are many people living with food allergies, Celiac disease or other food related intolerances or restrictions.

One day, I came into work and a co-worker, Genevieve  Fraser, asked if I was the one with the food allergy therapist magnet on my car. When I said yes, she informed me that she has an anaphylactic allergy to peanuts, and has since she was very young.  Suddenly, it was in my awareness that I had been bringing peanut butter to work almost every day that I am in that office, not even realizing my office neighbor, just across the hall, has to carry an Epipen everywhere she goes because of peanuts!  Boy did that get my attention!

I didn’t stop bringing peanut butter to work at first, but I noticed I felt nervous and worried every time I did, so I finally stopped bringing it.  However, I noticed being concerned about others using her office when she was not around, and wondering if people were taking peanuts in there.  I finally decided that I should learn more about what it is like living as an adult with a severe anaphylactic food allergy, rather than just going off what I read and my own assumptions.

When I asked Genevieve if I could do a feature interview on her, she was so great and willing to share her story. I have to say, this interview was so informative, empowering, emotional, and motivating, that it really helped put some aspects of living with life threatening food allergies into perspective.  Genevieve not only survived her childhood, despite bullying and being different, but has gone on to complete her college degree and is working on her master’s.  She has dedicated herself to helping others overcome challenging obstacles in their lives so that they can live a full life, despite whatever challenges they might be facing.  I hope you enjoy this interview as much as I did!

 

Interview with Genevieve Fraser

Jenn: How old were you when you first got diagnosed with anaphylactic peanut allergy?

Genevieve: I was approximately 3 ½ years old.  My dad took me to Dairy Queen and got a peanut buster parfait because that’s his favorite, and I got an ice cream cone.  I asked to taste his and he gave me a really small bite.  I immediately started vomiting all over the place and breaking out in hives.  My parents took me to the doctors, who then referred me to National Jewish for peanut allergy.

 

Jenn: What did they do to actually diagnose you?

Genevieve: They did a really small skin test and it was established that I definitely had peanut anaphylaxis.  But, because I was so young, they didn’t want to push it too much more, so they had me come back a couple of years later to do the whole skin test diagnosis.  Back then, they would put peanut oil on the skin.  I vividly remember watching the Little Mermaid and lying on this table as they put peanut oil on a section of my forearm.  My skin immediately started to bubble up with blisters.

 

Jenn: Do you remember feeling scared?

Genevieve: I don’t know if I was scared, but my mom was freaking out. So I was like, “what is going on.”  It itched and burned, and I definitely remember watching the Little Mermaid and wondering what was happening.  I was five, so I didn’t really quite understand.  I had always had asthma, so I was used to going to the doctor, but this time was totally different.   They said that I was one of the most severe cases they had seen at the time, and so I was kind of like their little guinea pig for awhile because it was so bad.

 

Jenn: What year were you diagnosed?

Genevieve: Well, I was born in 86’ so I was first diagnosed around 89’ and then the full test was probably around 91’.

 

Jenn: Do you remember what your parents’ reactions were like?

Genevieve: My parents were devastated.  My mom still talks about how scary it was because there was nothing really known about it.  Peanut allergies weren’t well known, there weren’t advocates in schools, and I was like the first kid to come through with such a severe allergy to food.  So, they had to try and make all of these exceptions for me and they didn’t understand it.  So, I’m thankful that my mom could be a stay at home mom, because I don’t know what I would have done.  She wouldn’t have been there every day to take me home for lunch.

 

Jenn: Did you go home every day for lunch?

Genevieve: Eventually I did because I was teased so badly. I had a girl, probably around 3rd grade, actually shove a peanut butter and jelly sandwich in my face.  My parents were scared that I would get beat up or hurt, so my started coming to get me every day for lunch. They had separated me at school to my own table, a peanut free table, but this didn’t help me at all because then everybody was like “what’s wrong with her.”  I was called “Peanut girl” instead of by my name.  I had asthma too, so I couldn’t do PE.  I couldn’t climb the ropes, I couldn’t run, and so I had to sit on the sidelines for that too.  So, every aspect they could tease me about, that’s what they did.

 

Jenn: Was it really hard to make friends?

Genevieve: For sure, I’m lucky that I had a younger brother, because his friends were much more accepting and nice to me.  I think it is because they were younger and they saw me getting teased.  So I was mainly friends with my brother and his friends.  I also spent a lot of time with my animals, and that was a huge outlet for me.  Being able to go home and see my dogs, who were always happy to see me, was what I did. I spent time training my dogs.  It was hard though, and eventually I had to switch schools and go to a charter school where nobody knew me and there were other kids that needed special attention.

 

Jenn: So, it took actually changing schools to change the patterns?

Genevieve: Yeah, it did.  I had to start over.

 

Jenn: Oh my goodness…that had to be hard.

Genevieve: It was really hard, and it did suck.  Before changing schools, I would sometimes say I was sick because I didn’t want to go to school and get teased.  So, when I switched schools, I was actually really far behind.  In the fourth grade, my parents realized I didn’t know how to read because I had missed so much school. I had to do private tutoring with my mom and a bunch of other stuff just to get caught up to where the other kids were.  It was hard.  I hated being a kid…because kids were so mean to me, and adults wouldn’t believe me when I told them I had allergies.  So, it was like I couldn’t win. No one was my advocate, except for my mom and one of my teachers who “got it.” My mom asked the school if I could stay with the same teacher from 1st to 3rdgrade because she understood.  This didn’t help me at recess, but it helped me in the classroom.

 

Jenn: I’ve often heard that some people really just don’t get it. For example, I’ve heard of other parents not understanding why their child can’t have a peanut butter and jelly sandwich at school.  Why is it so hard to just pack something else?

Genevieve: That’s what I would think, but my mom always said to me, “You have to live in the world.  The world is not going to revolve around you, so you have to adapt and advocate for yourself, because you have to live in the world.”  She has said this to me since I was little.  She didn’t expect the school to get rid of the peanut butter cookies, but she said to me, “You need to know where they are and they need to be kept separate.”  One time at school, I asked for a sugar cookie and they gave me a peanut butter cookie.  I tried to tell them that it wasn’t a sugar cookie, and I was assured that it was.  So, I touched it to my tongue and my tongue started swelling.  I got rushed to the nurse’s office and they called my mom.  My mom was so mad, but she said, “at least she tried.  She didn’t trust what you were saying.”  So then she taught me, “Trust but verify.”

 

Jenn: Your mom sounds really great!

Genevieve: She is! She was very supportive growing up.  She was the girl scout leader because she didn’t think anyone else would understand.  Do you think my mom wanted to be the girl scout leader!? No, my mom doesn’t camp, but she did it because she was worried and wanted to keep me safe.

 

Jenn: It sounds like your mom wanted to help keep you in the world and not isolated.

Genevieve: Yes, I’m very lucky that my family could afford to do that and that my dad had a good job, so my mom could stay home for me.  I don’t know what we would have done otherwise.

 

Jenn:  Honestly, when you told me that you had a peanut allergy, I was blown away because it seems so easy for you.  Then I see some of the kids I work with that have life threatening food allergies, and how difficult it can be for them as they learn to navigate the world.

Genevieve: It’s just the way it’s always been this way, and it wasn’t easy as a kid.  The only way I can explain it is, that you’re not really a kid, because at every moment of the day you have to be aware of your environment.  Something as little as making squirrel feeders in Kindergarten becomes this huge issue, because it’s peanut butter and birdseed.  It’s all those things that should be fun and exciting to an innocent kid that aren’t.

 

Jenn: When do you think you realized your own mortality?

Genevieve:  Well, I’ve never had to use my Epipen, thankfully.  I don’t remember my first exposure to peanuts, but my parents were very upfront about it the whole time and said, “Genevieve, you cannot eat this, you WILL die.”  Having a couple of reactions where my tongue swelled and it was hard to breath was really scary, especially the realization, that if I were to die, it would be painful and scary because I would pretty much suffocate.  The fact that I would suffer was the scariest.

 

Jenn: That would definitely be scary.  One thing I’ve been working with folks on is balancing fear with avoidance, because the fear can be so overwhelming you want to avoid situations.  But, the fear is also necessary, because it helps keep you safe.

Genevieve: That’s true, if you didn’t have some fear, then it wouldn’t be seen as big of a deal.  Honestly though, it’s not fear for me anymore.  I’m not afraid of accidentally eating a peanut, because I know that I can advocate for myself.  If I’m ever not sure about anything, I can always ask.  When I was in grade school though, it was definitely a fear, but when I got to high school, I was like, “You know what, this is up to me.  My parents and school aren’t always going to be there.  It’s my responsibility to figure out what I do and do not need.”

 

Jenn: How was the transition to high school?

Genevieve: You know, I think going to the charter school was very beneficial to me because I got the attention and individual support that I needed.  So, when I got to high school, it was almost like I had a chip on my shoulder because I had been teased so much in grade school, that I was finally like, “Screw you.  You are not going to ruin my life.” I was confident that I would be able to ask the questions that I needed to. “Trust but verify.”

 

Jenn: I really like the phrase, ” Trust but verify.”

Genevieve: Right, and it’s important to remember that people are not doing things maliciously.  They’re not saying, “here have a peanut butter cookie because you’re allergic to it.”  Most people just don’t know and aren’t aware of it.  For me, it’s not looking at people as something I have to got up against, but it’s education. I think one reason that I’ve gotten good at speaking with people I don’t know and advocating for my clients is because I’ve had to do it since I was five years old.  When people would say, “Genny, just because you don’t like peanuts, doesn’t mean your allergic to them,” I would have to say, “Well, no, actually I am allergic to them.  This is my Epipen, and this is how I use it.”  I also wore a medical alert bracelet, even though I hated it.  I felt like it was a stamp on my forehead that there was something wrong with me.  But, it definitely helped me when I needed to explain it.

 

Jenn: As a child, if people don’t believe you, it seems like you almost need that bracelet to get the point across.

Genevieve: Definitely having those things available and having my mom available were very helpful. Plus, my mom always made sure to let people know what I could and could not have if I was going to someone’s else’s house. So, it was definitely a learning experience, and I can’t imagine how scary it must have been for my parents, because back then there was very little support outside of National Jewish (Hospital). There just wasn’t a lot of information, and my parent’s didn’t have other parents to ask for advice, and pretty much had to reinvent the wheel of how to take care of your kiddo if they have a peanut allergy.  My mom has said to me, “They could have told me you had cancer and I would have felt pretty much the same way. That’s how scary it was. It’s terminal, she’s going to have to navigate the world where a little peanut could kill her.”

 

Jenn: How has it gotten easier over time?  How do you feel at like restaurants?

Genevieve: Well, any kind of Asian food, like Thai food, I pretty much stay away from. I won’t go to a completely Thai restaurant because of cross contamination.  But, I go to Dairy Queen, and I just let them know I have a peanut allergy, and they are willing to clean the blender and stuff for me. But, you have to be willing to say, “I need this.” At a restaurant, I will ask the server about a dish if I have any questions about it.  If it’s an iffy sauce, I will ask, “does this have any peanuts in it?” If they say, “I don’t think so”, I will request they check with the kitchen. My partner also helps me out and he will ask for me sometimes because he understands.  But, he still eats peanut butter, and I’m not going to ask him to change this for me. Once again, I have to live in the world, and it doesn’t revolve around me.  He loves peanut butter and jelly, but he knows to make it before I get home, he doesn’t let the knife touch the counter, he washes it completely with soap and water and then puts it in the dishwasher. I’m not asking people to make sacrifices for me, it’s just about the awareness and for me it’s just realizing that it’s always going to be this way, unless they find a cure.

 

Jenn: So, another question that I’ve had is if you go to baseball games?

Genevieve: Baseball games really aren’t bad because it’s open air.  Sometimes, it will trigger my asthma and I have to get up and walk around a little bit, but I haven’t really had a big problem there.  Bars that serve peanuts, on the other hand, can be a problem.  For example, a bar that is crowded with big bowls of peanuts I can’t even go in because of the heat and all of the dust and everything released in the air.  Some places, if not crowded, I can go in for a little bit, but sometimes I have to leave.  I know when my body is saying it’s too much and I need to leave the situation. Most of my friends know that I have a peanut allergy and so they understand if I say I’m having a reaction and need to leave.  But, at the same time, it doesn’t define me.  I don’t introduce myself to people and say, “Hi,  I’m Genevieve and I have peanut anaphylaxis.”  That’s not in my name…(laughter).  If it comes up and there’s something that might happen, then I will say something.

 

Jenn: You’re totally right, sometimes I find myself wanting to put a sign on your office door so people using your office don’t take peanuts in.

Genevieve: (laughter) Really, it’s just being aware of your surroundings, and being willing to say what you need.  I’ve never had anyone give me attitude about it, and most of the time they’re more paranoid about it than I am.

 

Jenn: So what do you do if you feel like someone has had peanuts in your office?

Genevieve: You know, I’ve never really had a problem with that, but there have been times when I’ve walked in and someone is heating up a microwave dinner that has peanuts in it, and I can tell. Those really bother me.  I just hold my breath, go in my office, shut the door and open the window.  I’m not going to say to people, “I’m in the office down the hall, so can you please not bring that again for lunch.”  Once again, I’m not going to ask the world to work around me.

 

Jenn: I think that’s great! That’s what I really strive to help people with, is being able to navigate the world, work around their allergies, but also feel comfortable.  Although, I definitely notice though that an increase in the number of allergies, the increase in challenges, but there are still ways to feel comfortable and live a full life in spite of food allergies.

Genevieve: Totally.  There’s days when I don’t even think about it at all.  But, if I’m at a bakery or a new restaurant, then I definitely think about it.  There was this one time, when I was a freshman at CU Denver, that I went to one of the cute little delis on campus and ordered the Vegetable Soup without even thinking about it. So, I get it, sit down, and it looks like regular vegetable soup, until I take a bite.  I was like “Oh! Peanut vegetable soup, that wasn’t on the sign!” So, I told my friend we have to go right now to the ER on campus.  I went there and I told them I had peanut anaphylaxis and that I had just eaten a bite of peanut vegetable soup.  They shot me up with Benadryl to try and avoid the Epipen, and it kind of knocks you out. But, at this point, I’m so mad that I storm back to the deli and told them, “You’re sign didn’t say anything about having peanuts and that should be on that sign because when I see vegetable soup, I’m not thinking peanuts!” If it was spicy Thai salad, I would have totally expected it, but not when it was vegetable soup.  I was so mad….but they were so sorry.  I came by a few weeks later, and on the sign I saw ‘Peanut Vegetable Soup!’

 

Jenn: That would definitely be scary and upsetting.

Genevieve: Well, and part of the reason I was so mad is because I had been so vigilant and I know what I can and can’t eat…so to have this happen really upset me because it could have been so much worse.  My lips swelled to the point they were cracking.  I looked like a duck that got beat up (laughter).  That’s how instantaneous it is.  At this point, I had the realization that, not only is this not going away, but it’s never going to change.  It’s never going to get better.  I realized, “you are always going to have this, so don’t even think about trying a Snicker’s bar!” I was almost mad at myself for letting it happen, but then I had to remember that things might happen sometimes.

 

Jenn: So, do you think food labeling has gotten any better?

Genevieve: Well yes and no.  I think it needs to be clearer, for example saying “contains peanuts” instead of “might contain peanuts.” And, I think it needs to be listed at the top of ingredient list instead of all the way at the end. It needs to be more prominent.

 

Jenn: Do you eat food produced in the same facility as peanuts?  How do you make this decision?

Genevieve: Yes, I do.  I’m wary of things that contain other nuts in them though, although I do eat other nuts.  I just do it in small quantities and I don’t eat things like mixed nuts where there’s an increased risk of cross contamination.

 

Jenn: So, how do you feel when you are at a party and there are bowls of nuts along with other foods that people are touching with their hands?

Genevieve: I will generally ask for the main bag that the chips came out of.  But, at the same time, if there’s a lot of nuts on the table, I’m probably not going to each much of anything.  However, most of the parties I go to, people know and so they don’t really put a whole bowl of peanuts out.

 

Jenn: Did your family completely remove all peanut butter from your home?

Genevieve: No, we had a jar of peanut butter that my mom kept on a very top shelf because she loved peanut butter. But, she would only eat it when I wasn’t home, and we always washed everything well.  To this day, I won’t just take a spoon out of the dishwasher that I don’t know where it’s been.  Really, it’s a lifestyle, but it’s not something that I’m worried about.

 

Jenn: Great…that’s what I want people to see, is that you still live your life, have fun, and work around it.  It doesn’t define you.

Genevieve: It’s not a huge adjustment; it’s just knowing when to be more alert and when to relax.  I don’t want people to look at me and say, “oh, that’s Genevieve, she has peanut anaphylaxis.”  It’s not something I’m ashamed of, it’s just the way it is.  It doesn’t define me.  It’s just a part of me, like being tall.

 

Jenn: How have you benefited from your peanut allergy?

Genevieve: I’m a total advocate, not just for myself, but for anyone who is being picked on or bullied, or anything like that.  I know what it feels like and I refuse to stand by while someone is being made fun of.  I feel like I can talk to anybody because I’ve had to my whole life.  I can talk about serious stuff, be passionate and be respectful.  I believe people are not coming from a place of bad intent, but they often just really don’t know.  Anger really just comes from a place of frustration and fear.  But that anger, really only makes things worse.  Educating at the appropriate times is what’s necessary. It will never define me, because when it does, that’s when it comes from a place of fear, and I don’t want to be afraid to go to a Baseball game.

 

Jenn: This is what I want to people to hear, is that you don’t have to live afraid.

Genevieve: Right, and I’m not minimizing, because as a kid, it was very scary, but now as an adult, it’s not that big of a deal.  I went to college, I lived in the dorms, and I didn’t stay home, and I’m okay. I lived with roommates, I’ve lived on my own, and I worked in a pet store where the pets ate peanuts.  I learned to live in the world.  It takes time, and it doesn’t happen overnight, but kids are smart and they will get it. If you give them enough tools and empowerment, instead of just saying, “no you can’t have that, say I don’t know, turn it around and read the label, can you have that? Okay, no it has peanuts, go look for something you can have.” Let them explore the world under supervision and give them the resources they need.  If you keep them sheltered, they are going to grow up afraid and unprepared, and it will define them, but it doesn’t need to.

 

Jenn: Thank you so much for sharing your story with me today. I look forward to sharing it with others.

 

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Author Information: Jennifer Leeson, Denver, CO
Denver Gluten-free Examiner at Examiner.com
Jennifer is a Licensed Clinical Social Worker and an expert on changing negative emotions, thoughts, and behaviors. After being diagnosed with Celiac Disease last October, she learned there was more to transforming her life around food beyond knowing what to eat and what not to eat. There were unexpected social, emotional, and behavioral challenges that arose. Since learning how to cope with these obstacles herself, she has begun teaching others how to cope effectively with the barriers that interfere with successfully changing one’s entire lifestyle around food. You can reach Jennifer at her e-mail address