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What Can Be Done to Ease the College Transition for Food Allergy Sufferers?

By Madeline Whitney

Epi pen

photo by Madeline Whitney

“Maddie,” my older brother said quietly as he pulled away from our goodbye hug after visiting for a football game, “Please don’t die.”

I thought he was joking, as older brothers love to do, but as I looked into his eyes and saw the seriousness behind them, I reflected back on the first four months of my college experience.

Prior to coming to Notre Dame, in my sophomore year of high school, I was diagnosed with a food allergy to sesame, after an unfortunate incident with hummus. However, with some precautions and after obtaining emergency medicine, I was able to avoid any issues throughout the remainder of my time at home. This all changed when I went to college.

During my first few months, I went into anaphylactic shock on four separate occasions, received six doses of epinephrine, took two trips to our local emergency room, listened to my parents frightened tears countless times over the phone, and was on a first-name basis with the first responders from Notre Dame Security Police. I had almost died four times, but I had just accepted it as my normal.

My brother’s words stirred something up inside of me and helped me realize that my life and college experience did not have to be like this. Even in this tumultuous time of change, my allergies did not need to define me. I also realized I was not in this alone. There are countless other students struggling with similar allergies, and I began to wonder, what can our universities, our friends, our families, and we ourselves do to help us navigate this transition to college?

12.5% of all food allergy-related deaths occur on college campuses, according to research done by S. Allen Bock, Anne Munoz-Furlong, and Hugh A. Sampson, food allergy and anaphylaxis researchers. But there is minimal data on the actual percentage of college students who suffer from food allergies because many students do not document their allergies (Bock, Munoz-Furlong, Sampson 1016). Students with food allergies have to deal with both the new challenges college brings as well as learning how to stay alive with their allergies in this unfamiliar environment. Brand-new experiences like dining halls, dorms and roommates, social culture, and romantic relationships that every college student has to learn how to navigate become potential deadly obstacles that allergy sufferers must learn to overcome in this unknown space. Many students, like me, may have had full control of their food allergies back home due to accessibility to safe foods and living with a strong support system. However, in this new environment, many students are not taking the appropriate precautions to ensure their safety. Research done at a few major Midwestern universities by Marilyn Karam, Rebecca Scherzer, Princess U. Ogbogu, Todd D. Green, and Matthew Greenhawt, immunologist researchers, shows that only about 36.7% of college students with reported food allergies actually carry their emergency medication with them at all times (Karam, Scherzer, Ogbogu, Green, Greenhawt 504). Without this medication, any interaction with a food someone is allergic to can become a damaging, deadly encounter.

My first experience with allergies here at Notre Dame happened at a common gathering spot for all college students, the dining hall. I sat down for a nice meal with one of my friends, took a bite of a food that I had thought I had eaten before, and immediately knew that it contained sesame oil. However, like many other students, I was not carrying my emergency response medicine, in my case an Epipen, or self-injectable epinephrine. We rushed back to my dorm, grabbed my Epipen, and sat in my rector’s office debating whether or not to use it as my tongue swelled and my throat began to close. I ended up being very lucky. I can only begin to think what would have happened if my friends did not know where my medicine was or if I had been across campus when this occurred. You might think that this experience changed my perspective, and I began to carry my medicine everywhere I went, but besides taking more precautions in the dining halls, I stupidly did not make much change.

Perhaps because there is a stigma surrounding carrying an EpiPen. It can make one feel childish or out of control when in reality even just carrying one’s EpiPen increases user safety. The visual of someone carrying an EpiPen increases the precaution of those around them and reminds the allergy sufferer to be careful. College students, however, often want to be seen as going with the flow and not worried; risk-taking behavior of all sorts thrives in college. Sarah E. Duncan and Rachel A. Annunziato, professors of psychology at Fordham University, claim that “it is possible that general risk-taking behaviors exacerbate college students’ nonadherence to self-management behaviors” (Duncan and Annunziato 332). Basically students feel that because they are already making plenty of potentially dumb decisions, they can take a few more. For food allergy sufferers this normally means not telling their friends about their allergies and forgetting to bring their emergency medication with them.

The easiest solution here is turning carrying emergency medicine from a hassle into just a normal part of daily routine. Getting students in the habit of having an EpiPen in their backpack and making sure their friends know about their allergies is crucial. There needs to be a shift where students understand the necessity of carrying their medicine, and friends are supportive and understanding when they see it or are told about the allergies. Friends of these sufferers just need to be open and understanding when this conversation happens, knowing that the burden is not on them, but that their awareness is helpful overall.

Another complication of food allergies in college researched by allergists John P. McGovern and James A. Knight is that they can be even more dangerous when combined with emotions of stress or anxiety (McGovern and Knight 3). College is not known as the calmest, most comfortable place in the world. In fact, studies done by the American College Health Association show that 49.5% of college students report tremendous or more than average stress levels, and 51% have felt overwhelming anxiety in the past year (NCHA 2017). This combined with the already existing stress from maintaining food safety can be very difficult for sufferers to bear.

My second incident came the week before a big test. Due to the stress of studying and also missing food from home, my friends and I decided to order sushi as a little treat. A little bit after eating, I remember turning to my friends and asking them if my tongue looked swollen. The fearful looks in their eyes gave me all the confirmation I needed, and I was rushed to the emergency room. My resident advisor and one of my friends sat with me all night in the hospital as I received additional medicines to control my symptoms. By the time we finally got home around midnight, I could not even think about doing school work as my body was emotionally and physically exhausted. In addition, many doctors will prescribe steroids after an anaphylactic reaction to reduce the risk of a biphasic reaction, a type of delayed relapse response potentially occurring in the days following initial exposure to the allergen. On these pills, I was a whole different person. I would cry at the drop of a hat, felt like I was going to throw up every second, and was exhausted beyond belief. Just sitting in my classes felt impossible. The whole week I was not only scared of eating food due to the stress that it might unknowingly contain my allergen, but I was also stressed about falling behind in my classes. In sum, I was a mess, and it felt like there was nothing I could do to make it better.

This is not an uncommon feeling among allergy sufferers. In Anne Ersig’s, pediatric RN at the University of Wisconsin Madison, and Janet Williams’, professor of nursing at the University of Iowa, survey of college students with intense food allergies, one student expresses, “‘If I do accidentally ingest something I’m allergic to, I will be forced to miss class for potentially up to a week...and my mental capacity will be noticeably impaired for at least one month’” (Ersig, Williams 447). Knowing how detrimental an attack can be not only on one’s body but also academic performance only enhances existing stress. It is a moment when the only thing that truly matters is staying alive, but due to the atmosphere of college, the food allergy sufferer also worries about their schoolwork and falling behind.

The key solution in terms of dealing with the stress aspect of food allergies relies on universities. A university cannot go in and get a food allergy sniffing dog to check every morsel a student consumes, but they can be understanding when it comes to academics. Obviously, students must maintain the rigor of their course loads, but more times than not a reaction is out of students’ hands and is dumping bucket loads of stress onto said students. Allergies can be considered a disability, and universities are required to provide accommodations for disabilities. Ideally, this would look like more relaxed deadlines or providing a designated nutritional counselor for students to talk to post reactions. Luckily, here at Notre Dame most of my professors have given me extra time on some assignments and our nutritionist on campus, Jocie Antonelli, is kind, caring, and extremely supportive. In these ways, the university has helped me immensely without impacting the other students they must also take care of.

Other common issues for food allergy sufferers include uncertainty about having safe foods especially in busy times and difficulty trusting others around you (Ersig and Williams 448). When students are in a rush or without access to a kitchen to cook for themselves in, there is often a heavier reliance on processed foods than a student with food allergies was probably used to back in their safe home environment. When you only have a fifteen-minute break for lunch, it seems a lot easier to just grab a granola bar on your way, but relying on this processed food that has more potential to be cross-contaminated with an allergen can put these students in a very dangerous position. In his New York Times article, journalist and father to a food allergy sufferer, Eric Athas, exposes how some allergens are not actually required by the FDA to be labeled, making this processed food shift even more detrimental (Athas). My allergy, sesame, is currently not required by the FDA to be labeled for, so it can hide in processed foods as something generic like “natural flavors.” Basically, a food could look completely safe when in reality my allergen is lurking inside.

My third instance of food allergy issues came right as I was sitting down to take a midterm. Rushing out the door to make it across campus for my 8 a.m. exam, I had grabbed a protein bar from my dorm attempting to get some food in my system. I sat down in the exam room and began to feel the familiar signs of an anaphylactic reaction. I went to my professor informing her that I would reschedule and needed to leave. She asked if it was just testing anxiety. At this point, I was stressed, angry, and struggling for air. Not wanting to be that girl I left the room to stab myself with my EpiPen and call NDSP in peace so as to not disturb the other test-takers. I spent the remainder of the day in our on-campus medical facility being monitored and receiving additional epinephrine doses as I was not getting better. After this experience, I lost so much trust in those around me. I began to wonder what would happen if I was physically unable to use my EpiPen myself. Would others take the situation as seriously as it actually is or would they find another reason, like test anxiety, for my troubles breathing and swollen tongue? I feared telling more people about my issue because I felt they too would not understand the extent of my food allergies, and that I would then find myself in dangerous situations.

However, this barrier is one that the food allergy sufferers must take on themselves. They must continue to advocate for their allergy and educate others about it. They need the support of friends and family to bolster their words, but they must also find the strength and courage to speak and bring awareness to this issue. They can start a club or educate their peers by writing an essay about their experiences. They must be the ones to start the conversations with their peers, no matter how scary it might seem, because it is the best way to ensure their overall safety.

It is a general assertion that college is hard, but college with food allergies can often seem impossible and unnecessarily dangerous. Some of these barriers are coming down as more and more dining areas are implementing allergy-friendly zones and increased food labeling is enabling consumers to be more aware of what exactly is in their processed foods. However, many of these obstacles will probably never go away, but that does not mean that attempts at change should not be made. The more students that come forward bringing awareness to their allergy-related struggles, the more people will see the need for change on our college campuses. For me, writing this essay has enabled me to be so much more vocal about my allergies, putting me in a much safer position. I am proud to say that I have not had a severe reaction in the second half of the school year. That being said, the path for me and other students who must manage their food allergies on a college campus is not going to be easy, but every day we make it work we can be an inspiration to a small child being diagnosed with a peanut allergy. If college students with allergies can take comfort in nothing else, those who speak up and educate others should know that they are forging the path for change and allergy-friendly college campuses in the future.