I have carried an EpiPen and have been worried about anaphylaxis every day since I was 5 years old. What might surprise you is how little that has stopped me from living a fulfilling life. Most people hear ‘severe nut allergy’ and imagine a life of restriction, but the truth is much more complicated.
While my childhood memory is very poor, it is clear how much effort my mum went through in keeping me safe. In the 90s/early 2000s, allergy awareness was scarce at best, with it being quite common for allergies to be not taken seriously and dismissed as simple intolerances. This meant witnessing lots of dramatic and embarrassing explanations to friend’s parents about how their son’s birthday cake could actually kill me. One friend's dad even mocked her for being overprotective, to my face not hers. My peanut allergy meant packed lunches everywhere, going without food at social events, and constant comments about how difficult my life must be. Thankfully new policies like Natasha's Law and Benedict’s Law, and all the advocacy work they represent, show that we’re a long way from that environment. But for everyone with a nut allergy to live with confidence, there’s still a long way to go.
As life went on, so did the second guessing and anxiety. I became as neurotically vigilant as my parents, with every meal being a potential anaphylactic reaction, every social occasion with food a source of paranoia. International travel became required for my job, and while it was something I always doubted I could do, I managed to find a rhythm where my allergy felt manageable. Travelling back from Boston last year shattered this complacency. I had gone through all the usual precautions for the flight. Wiped down the seat several times, sanitised, asked the crew to announce my allergy, and got ready to manage turbulence on an empty stomach. After some back and forth answering the usual questions around "is your allergy airborne?", I managed to fall asleep. I immediately woke to the vivid smell of peanuts. To my left was a woman eating monkey nut style peanuts, cracking them in her lap out of a big bag, leaving crumbs and peanut shells everywhere. It reminded me of going to watch a baseball game in the US, where I only realised when leaving my seat that the crunching below me was a carpet of beer-soaked peanut shells and not gravel. She was earnestly sorry and agreed to stop eating them, though when she apologised by rubbing my shoulder with peanut-greased hands, it wasn’t as comforting as she intended. Middle seat, no escape. I spent the rest of the flight quietly hyperventilating with my neck stretched away from that shoulder, until I could thoroughly clean myself in the airport bathroom. While this sounds quite funny in hindsight, it was a serious near-miss despite all the effort I’d been through to prevent a serious reaction.
I’ve been lucky enough to only experience one definite anaphylactic reaction in my adult life, which was during a trip around northern India. A country that I love, that I’ve visited 8 times, and where I even got married. Travelling around India with a severe nut allergy was always going to be a huge challenge. Allergy prevalence is much lower, so of course in many places the first time people heard about one was when I told them about mine. Even then, it took a lot of effort to carefully explain that this wasn’t a preference or lifestyle choice. I had the advantage of my wife’s extremely caring family, who were able to ease my constant worry and communicate in multiple languages to keep me safe. But still, the risk was always there. One evening we were in a famous tourist spot near Delhi, and immediately after taking a bite of curry, I felt tingling in the back of my throat. Still awkwardly polite about potentially dying, I walked away and hoped to cough it out - thinking I was just starting to become ill. It was only when, eyes watering, I checked my reflection in the mirror and saw my swollen lips, face, and my breathing became laboured, did I realise what was happening. Despite being constantly anxious about having a reaction, in the moment when it was finally happening, I was strangely calm. My father in law happened to have an extra strong antihistamine with him, which may have saved my life. The whole hotel sprang into action having seen the commotion, and I was in luck that a local travelling doctor was in our particular village. The rest is a total blur, though I remember fast-paced Hindi and a loaded syringe of an unidentified liquid being brandished in my direction. It was the kindness of strangers and my family’s preparation that made the event a lot less serious than it could have been. What stayed with me afterwards was the realisation of how much I'd come to accept as normal. The anxiety, the constant second-guessing, the quiet isolation of being the person who complicates every meal. I hadn't noticed how heavy that had become.
With these stories, I don’t blame a lack of care or expect everyone around me to be perfectly accommodative all the time. That would be unrealistic and add even more strain to my mental health. However, these events show that allergic reactions are often unavoidable, and that the burden always falls on the person with the allergy to prevent what they can. While the UK is changing piece by piece to be a better place for those with anaphylaxis, these systemic changes take time to have a real effect. Meanwhile, life goes on. In a modern busy world navigating travel, school, work, and constant social events all with an allergy takes a huge amount of time and effort. There are daily challenges beyond just carrying an EpiPen and knowing the basics. Staying knowledgeable about our own conditions, and sharing advice with each other is a great way to combat this. Product labelling and awareness have improved massively over my lifetime, but this doesn’t change what a life threatening allergy means in practice.
The world will not completely reshape itself around our allergies - at least not quickly enough. But living freely with anaphylaxis is possible. It just requires the right knowledge, the right preparation, and a community of people who're willing to share their experiences.
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