I Have Food Allergies and Anorexia. Balancing Them Is A Lethal Challenge.
Content notes: discussion of food/allergies, eating disorders, and restrictions, anorexia, trauma, mental health, recovery, anxiety, bullying
I have always had a difficult relationship with my body. Years of trauma and the pain of existing as a perpetual “other” fueled my eating disorder. My protective instincts manifested in an urge to disappear, to make myself as small a target for abuse as possible. I starved my body and soul of the nourishment it needed, because I internalized the world’s messages about my worth as a Black, Muslim, and disabled woman. Those crushing and intersecting oppressions spurred my own justice work, and ultimately led me to a community of like-minded disability justice activists and organizers. I experienced safety and affirmation in the stories of other disabled and mad, queer and trans, Black and Indigenous people of color (BIPOC). I felt whole. It would be the first time in my life that I was able to make real progress towards recovery from anorexia. Until I took a bite of a dainty looking pastry that nearly killed me.
I am one of 32 million Americans with food allergies. Even as a young child, I knew that I should avoid eating anything made with nuts because it would make my mouth itch and stomach hurt. At the time, I didn’t understand that these were telltale signs of an allergic reaction; nor did I understand that repeated exposure to an allergen can cause “hyper-sensitization.” Put simply, allergies are an overreaction of the body’s immune response. Over time, the immune system’s response can become more severe, sometimes deadly. For most of my life, itchiness and stomach aches were the extent of my reactions. That changed two years ago, when I first experienced acute anaphylaxis. It started the same way it always had before. I had a terrible scratchy sensation in the back of my throat like I had swallowed a cactus and its spikes had lodged themselves behind my tongue. My stomach started rolling and twisting itself into knots. The reaction seemed more severe than usual, so I took some Benadryl. I don’t remember how much time elapsed, but suddenly my throat closed and I was completely unable to breathe. My lips turned blue as I croaked and sputtered in panic, trying to get oxygen flowing again. I don’t know quite how, but I survived. My body recovered, but the trauma of this experience still weighs on me. It is a trauma shared by millions of others.
The prevalence of food allergies in the US has grown precipitously in the last forty years. Among children, the prevalence of tree nut and peanut allergies nearly tripled between 1997 and 2008. There is currently no cure for acute food allergies and effective management involves avoiding exposure to the allergens and learning to identify symptoms of an adverse reaction. Since the onset of my allergies came in adulthood, I had to make sudden and dramatic changes to my lifestyle. Through this process, I would soon learn that many of the strategies necessary to avoid accidental exposure to allergens would undermine my eating disorder recovery, and exacerbate my other psychiatric symptoms.
The most important strategy for avoiding allergen exposure is meticulously reading food labels, and ensuring that everything is cooked and served in an environment which minimizes the chance of cross-contamination. In many ways, living with a lethal food allergy necessitates fixating on food – how it’s made, where it’s served, and how it’s handled. It’s little surprise then that I have become obsessed with food. My allergy management practices have catapulted me into familiar and disordered patterns of compulsive and restrictive eating. Desserts are so anxiety-inducing that just the sight of a pastry can trigger a psychosomatic response in my throat. Over time, my allergy management practices and eating disorder behaviors have become deeply entangled, stripping away the feelings of safety I once experienced whenever I was among community. The persistent inaccessibility of our spaces when it comes to food has exacerbated my fear and paranoia, as does the frequent abuse and bullying those of us with allergies continue to endure.
Bullying related to food allergies has been a persistent problem for children with severe allergies for many years. However, it was only recently that studies began to capture the scale of this problem. A survey of 251 families in 2014 found that nearly one in three children reported being bullied because of their allergy. This is staggering, especially since food allergy bullying goes well beyond verbal taunts. A separate study found that among children who were bullied for their allergies, more than half reported having an allergen thrown or waved at them, or having their food purposefully contaminated with an allergen. This is not just bullying. Incidents such as these can severely injure or even kill the victims.
These findings are reflected in my own experiences with food allergies. I have gone into acute anaphylaxis four times in two years, in part because my allergies were not taken seriously. Even when my needs are accommodated, I am often met with anger or suspicion as people at once accuse me of overstating the severity of my allergy and guilting me for the immense burden my allergies cause. I have been at social justice conferences where I notified the staff of my allergy, only to be served contaminated food. I have been in disability-centered spaces and events which failed to properly label their food, thus putting me in the untenable position of either eating food that could be lethal or fueling my anorexia by avoiding eating altogether. This is not only common, it is the norm.
I have not yet learned how to navigate the world as someone who is both anorexic and living with severe food allergies. But I know that my trauma is compounded by the reality that both eating disorders and food allergies are not taken seriously enough by the disability community. I have been reminded time and again that I exist at the nexus of identities which are still ostracized by my communities. Building accessible spaces for people like me is about so much more than a label or a checkmark on a list. How we handle food in our spaces and convenings communicates to me not only if I deserve to be in that space, but whether I deserve to live in this body at all. Your choices about the food you serve and how you serve it tell us whether you believe our lives are worth those extra steps. We should not have to bare our trauma to be believed and affirmed. We should not have to prove that our allergies are real or lethal when we demand better food access. But now that I have, will you commit to transforming our spaces so that I can once more feel safe and whole? We must move past gatekeeping and towards building a world where we all feel safe enough to show up fully, to take up space, and to feel worthy enough to nourish ourselves in body and soul.
Azza Altiraifi (she/hers) is an award-winning Afro-Arab disability justice advocate from Alexandria, VA. She currently works as a researcher at the Disability Justice Initiative at the Center for American Progress. Azza was also recently selected to join the inaugural cohort of the Forward Promise Fellowship for Leaders by the Robert Wood Johnson Foundation.
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