I recently stumbled upon an instagram account @MyDearestFriendsProject, a COVID-19 collaboration centering around disabilities. If you’re reading this in April or May 2021, MyDearestFriendsProject is still accepting submissions online on how the pandemic has impacted your disability if you’re interested in sharing.
I wanted to share the email that I sent them, since it felt very much like a blog post I would include on Invisibly Allergic. Thank you for reading!
My Dearest Friends,
COVID-19 has forever changed the lens in which I view my life-threatening food allergy and I mean this in a positive way. I don’t want to glorify this pandemic, at all, because COVID-19 has been truly awful and painful in so many ways for so many people. With society stopping and shutting down, it did inadvertently create an environment where I initially felt isolated and was forced to slow down, and in this time, I did begin to do self-reflection more often than I ever would’ve taken the time to otherwise. Pre-COVID, I was stuck in a loop going through the motions each day living as much as I could as if I didn’t have a severe food allergy. I felt, and still feel, the immense societal pressure to fit the normal life of someone living without a severe food allergy, even though that isn’t my reality. I can see clearly now that I was living in a state of pretending and denial, trying to fit myself into a mould I didn’t belong in. Before the pandemic, I viewed my food allergy as a bad thing. Now, I know it isn’t a bad thing at all, it’s just not something society is designed for, so accommodations may need to be made for me, and that’s completely okay.
I’ve felt shame and guilt surrounding asking for accommodations in the past. I often would play down my allergy or even decide to not mention it out of fear of embarrassment in needing something to stay safe. I didn’t want to be different. This led to others, like my friends, my family and employers to misunderstand my own needs, since I was asking for accommodations only sometimes and irregularly, and even worse, this led to me feeling isolated and misunderstood by the people closest to me. I am a very extroverted and social person, so having a food allergy that causes me to feel left out has always been an internal struggle of mine. I like being included and surrounded by people, but I can’t always be if accommodations aren’t made. If I don’t ask for accommodations and do something risky, it likely means I’ll have a reaction and have to leave & then spend the remaining part of my day in a state of anxiety monitoring my reaction with my epi-pens closeby. Only until everything halted in March 2020, as a 31-year-old, did I begin to question if the life I was living and ask if the way I was living was suiting my own needs. Was I living according to my values, needs, and according to what brings me joy? For example, do I enjoy eating out? Not at all, not even a tiny bit. But I have done it throughout my whole life even though it is the equivalent to risking my life & gives me horrible anxiety before and after. Only during COVID did it dawn on me that I’ve been living my life for others, and prioritizing others staying comfortable over living my own life and speaking up for my own needs and preferences. Due to this, I’m reevaluating what I enjoy doing and what I don’t, and if there’s something that I have historically done that is too risky and could cause me to go into anaphylaxis, I’m trying to limit those actions. I want to live a life that suits my best interest, as I would hope my friends and family would do for themselves, too. Living with a severe food allergy disability and requiring accommodations has given me the gift of wanting others to be included and feel supported, welcome, valued, accommodated for, etc. as well. I know first-hand what it’s like to feel left out and it’s not a feeling I want others to experience if I can help it. That is the beauty of the disability community, I think we all understand the need for connection and inclusivity and are hyper-sensitive to making sure people are supported.
I’ll start off by explaining my disability story briefly. I have an airborne and cross-reactive peanut (food) allergy. I’ve had it since birth, I was born with eczema– a common sign of a food allergy in infants, and at the time, allergists advised new parents to avoid giving babies the common allergens. The first time I was given peanut ingredients (that we know of) was when I was 2, I was given a peanut butter cookie and had a reaction and was told to avoid peanuts from that point on. I’ve always carried epinephrine with me & my severe allergy has always been severe but has worsened overtime as I’ve had more severe reactions. I only recently started identifying as being “disabled” a few years ago. I didn’t know if I was or not. I felt like I was, because I used disability paperwork in school and college and at my work for my accommodations, but I was never told by anyone that I was a disabled person. I also didn’t know I had an immune disorder (my food allergy), that was something I learned on my own after hearing it be said in passing in doctors rooms and hospitals. I admit, having a food allergy and saying it is a disability still feels like a gray area that I often fall into because I am not getting disability from the state and I’m currently not filed to receive disability benefits. It just goes to show that disabilities can’t be generalized and they can look different. The way I explain it is that food allergies can be a disability, but not everyone’s food allergy is a disability. Every food allergy is as individual and unique as the person themselves, so food allergies are not a one-size-fits-all and never will be.
Right now, post-COVID feels like an opportunity for me to make clear my own limits and boundaries with friends and family as things “return to normal”, and also it feels like a time for change and opportunity to happen within businesses, corporations, and I feel many places are re-evaluating their own processes. Things that were once set in stone are now more malleable than ever before. I always dreamed about not having to go into a contaminated workplace, and now in the blink of an eye I’m suddenly full-time remote at home. Through COVID-19, I have gained perspective and empowerment that I can’t say I would have otherwise, at least not in such a condensed amount of time. My voice and authority around my disability is much stronger now. I follow many accounts on Instagram, podcasts & blogs that represent all types of disabilities & I’m so thankful that this connection can happen across the globe between people that never would’ve “met” otherwise. I’ve learned from these accounts that 1. My disability is a valid disability, 2. my experience is valid and I know it better than anyone else, and 3. I can’t be separated from my food allergy. That last point is critical, because as much as people try to act like my peanut allergy doesn’t run my life, it does. My food allergy does run my life, it does define me, and that’s completely 100% okay! I’ve learned it is nothing to be ashamed of. My severe food allergy has always been a challenge I’ve been overcoming, but there are ways to make aspects easier for myself. Up until about 8 years ago, I felt my allergic reactions were completely out of control, unpredictable, and irregular. With food allergies still being relatively new in the grand scheme of things, there’s not a lot of research or support around them, and there’s a lot unknown. It’s all very experimental and being studied still, it’s in the early stages. For example, what’s the cause of a food allergy, you ask? Good question, it’s unknown. I can tell you that it’s an immune disorder that involves an overactive immune response to something that typically isn’t seen as a threat to our human bodies.
Back in 2013, after going into anaphylaxis at an allergists office and having a near-death experience, one that could’ve been avoided in hindsight, I felt alone and unsupported by the medical community. This prompted me to look into why I was reacting in such an unpredictable way and track my eating and responses on my own, and basically, take matters into my own hands. This began my journey of educating myself about my food allergy and food allergies in general in ways that still aren’t widely available or known to the public and food allergy community. Right now, people are educating themselves on their own food allergies out of necessity. Food companies are popping up more and more who are creating a safe “allergen-free” environment on their own to fill this need of people looking for safe food options that can’t be found otherwise because the food labeling laws aren’t supporting the consumers. I have known all my life that I was able to have airborne reactions to peanuts, because I’ve had multiple reactions this way, and yet, allergist after allergist told me it was impossible. Now, in 2021, it’s still one of those topics some allergists are coming around to, and after all those years of people saying it’s not possible, I have to remind myself they’re studying ME to learn more about allergies, so I can trust my body and the response I’m having as being valid. I’ve risked my life hundreds and thousands of times because someone has told me something I was experiencing wasn’t true, and I’d put myself in a situation I shouldn’t have due to this, and later would regret it. It was frustrating being told I was essentially lying about my own lived experiences, especially when it was a painful experience that caused a lot of anxiety and confusion, like a severe food allergy reaction. Since food allergies are an emerging disability and understudied field, I now know that I am my own best advocate, and I have the confidence to trust my inner knowledge about my allergic bodily responses over any doctor. This goes to show there is a lot more work to be done in the field of allergies and immunology to get up to speed with supporting the population of allergic individuals.
While I was on this journey trying to get to the bottom of my reactions from 2013-2017 or so, I finally learned the common denominator amongst my reactions. I learned what was happening making them more common, and it was a complete lightbulb moment that has since changed my life. My allergies were no longer unpredictable, in fact, they were extremely predictable. It boiled down to how insufficient the food labeling laws are in the United States. It took me years after learning that the labeling laws are insufficient, to fully decide I needed to cut out eating from food brands that use peanuts in the facility and shared equipment. This hesitancy came from a combination of things – partially from a place of not wanting to be different, being overwhelmed about the task at hand, being frustrated by the lack of standards, and lack of transparency required, among other things. While yeah, I wasn’t excited having to call and email and wait to hear back on everything I ate, ingested, or put on my skin (food, medications, non-food product like cleaning products and hair/body/cosmetics, etc.), the most disheartening part of it was speaking to their often rude customer service reps about how they legally weren’t required to give me any information so I was basically out of luck. I’ve never had an eating disorder but there were times when I felt like I was close to going down that path out of frustration due to lack of labeling requirements. Many times I’ve felt out of options, like I couldn’t find safe foods to eat and only had a handful of random brands I could trust. I’d get frustrated and tired, emotionally and mentally exhausted, and eat super plain food that I didn’t enjoy just because it was the only thing I knew I could have safely. The actual act of calling wasn’t a huge issue for me, although it was time consuming and wore on me overtime if I had to do it a lot around a holiday or something, but it was trying to get information about the facilities and being shot down and being told they didn’t have to give it, or reaching out to 50 brands only to learn all of them use peanuts in the facility and shared equipment, even random stuff like sunscreen, medications I needed, and body lotions. I’d get a craving for ice cream and have to find the next best thing because even still there’s not a safe ice cream brand in-stores besides one flavor at Trader Joe’s. It sounds like a minor complaint, but it does add up and is exhausting. It is also expensive having a food allergy because you’re limited to buy from only a select amount of brands, and maybe they aren’t sold in stores near you so you’re stuck ordering expensive items and paying shipping online. My main takeaway from this: the food labeling laws in the United States have to get up to speed and support the people they’re feeding, there need to be strict labeling laws so people are aware of what they’re ingesting. Everyone deserves to know what they’re putting into and on their bodies and right now we do not, at all. Currently there’s not a lot of transparency in food products and even more in non-food products we put on ourselves and around our environment, and so the brands who are transparent and willing to give information about their labeling and facilities are the ones I end up buying from instead of going based off of price, where you can buy it, the company mission, what kind of food it is, etc. A lot of factors come into play while I’m shopping but peanut-related info takes the priority.
I was fortunate enough to be able to get the COVID vaccine and had a feeling since I have my severe food allergy, an overactive immune disorder response, that my reaction to the vaccine likely would be strong. I had no idea how strong it could or would be, but it lasted about 3 weeks from start to finish and even still (over 1.5 months later) I still have more soreness on the side of my body that received the injection. I lost my vision on/off and had a migraine and full body aches, fatigue, a fever, etc for over a week. Due to my immune disorder, I have a heightened immune response often to things like spider bites, metals, side effects to medications, etc. It’s part of living with a food allergy that I’m still discovering all the time. This is why I started my personal blog, Invisibly Allergic, because I realized I was looking for others like me online and wasn’t finding anything, and I knew food allergy disability representation is needed for those in the food allergy community to not feel alone in their experience. I understand not everyone wants to share their story, but I know for myself that if I don’t share mine, it leads to more confusion than it does not. With my new knowledge and perspective from COVID-19, I’m trying to make myself look like myself and not mirror what everyone else does. I can see the disconnect that’s been happening when I pretend my allergy is less than it is, and now realize that no one will ever know my true experience if I live this way. Doing this “faking everything being OK” ultimately hurts me, and hurts the allergy community, since I deserve accommodations just like everyone else does and should be able to ask for those. If no one is asking for their needs to be accommodated, then businesses and so on won’t know they’re needed. With all this knowledge and reflection that I’ve gained through COVID times, my relationships and connections with others are going to be stronger than ever, and I’m so excited about this. I want to be unapologetically myself now. It’s worth noting that the FDA loosened food labeling restrictions and requirements during the beginning of COVID, which was a hit to the food allergy community. When labeling requirements need to get stronger, it was difficult with them getting even less accurate and transparent. I’ve been hoarding safe foods during the pandemic as much as possible, in fear that grocery stores closing or being out of the brands I could eat would suddenly evaporate and I’d be left needing safe food. Luckily, that didn’t happen the same way it did with toilet paper for a while, but we did invest in a deep freezer to help be able to store more safe foods we find at the store since often they can be unpredictable and sold once and not restocked again.
I’ll end with saying my experience as a food allergic person is actually better understood now after the pandemic by those without food allergies in many ways. Because of my food allergy, I already wipe down all my food items coming into my house from the grocery store and markets, to rid it of potential peanut contamination, and I bring wet wipes with me when out in public to wipe my hands regularly of trace peanut contaminants. I often wear a mask in public spaces where peanut ingredients may be around, such as on an airplane, a public bus or at an event. I’m washing my hands constantly when out in public spaces or friends’ homes, and I try to not touch my face or mouth because there’s a good chance I’m accidentally contaminated by trace peanut particles when out and about. I wash my clothes more often than most, because if I have worn something in a public space where peanut trace amounts may be present, I won’t want to risk bringing those particles in and around my own house, which I try to keep as peanut-free as possible. Any public item I try to wipe down before bringing it into my home, such as anything bought from a store, library books, and even regularly wiping my phone and car steering wheel, etc. During COVID I’ve seen many people doing these actions that all are things I do in my regular normal day-to-day & so it’s been neat seeing others living my experience as a food allergic person trying to limit cross-contamination. My husband even remarked that “man, I wish peanut particles were as easy to get rid of as COVID-19” because it’s true, peanut contamination lingers where if you quarantine something potentially contaminated by COVID it eventually goes away on its own or a little alcohol spray does the trick. Alcohol/antibacterial spray and sanitizer doesn’t impact peanut contamination. I have to actually wipe everything down well to remove the contamination since it isn’t viral/bacteria. Prior to COVID, mask wearing made me feel so embarrassed that I would hardly ever wear my one, but now wearing my mask with confidence is finally a hurdle I’ve overcome, thanks to the pandemic! I don’t see it as something to be embarrassed by now- it’s a tool I can use to keep myself safe and give myself some peace of mine.
The pandemic has allowed me to attend many events that I normally would not be able to go to in-person due to my peanut allergy. As events moved online, they became more inclusive to many people with disabilities, and I hope that this doesn’t go away once things can “return to normal” because “normal” wasn’t always inclusive. I couldn’t attend a book club I was once an active member of since they switched it to being in-person at restaurants, but with COVID, I’ve been able to join online virtually! Movie theaters are another place I don’t go to since they are risky for my allergy, and I’ve been able to attend online screenings and showings across the globe with the shift of everything moving online. I’ve been able to attend so many virtual events in ways I’ve never imagined, thanks to COVID, and as things begin to happen in-person again, I don’t want to lose this option of online. It’s going to be something I urge businesses and places to continue doing, because it is much more inclusive. Even food allergy conventions moved online in 2020 and I was able to attend those, where normally I wouldn’t be able to because peanut ingredients would still be present at them, as silly as it sounds.
My severe peanut allergy is something I live with 24/7 and I can’t fully put into words the amount of insight I’ve gained about myself and my allergy through the past year, that I don’t know if I would have if we didn’t get thrown head-first into a global pandemic. Thank you for reading my story & for doing this important project.