Illustration: @lina_illustration

THE LONG READ

May contain anxiety: my nut allergy and me

Having an allergy that is genuinely life-threatening requires you to trust your instincts in a way that is difficult to explain, says Rachael Sigee

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By Rachael Sigee on

My mum once received the following phone call from me: “Hiya! No need to worry, but I’m just out shopping in Leeds and we’re having a really nice time, but – and this is not a big deal at all – I think I might have accidentally eaten nuts. Just wondered if you think I should use my EpiPen?”

I was 22 years old and, even after more than a decade of being severely allergic to nuts, my first response was to call my mum, who in no uncertain terms told me to hang up immediately and call an ambulance.

Even though I knew immediately that I was having a reaction and exactly what I needed to do, I needed reassurance that I was right before I pulled the trigger and potentially ruined a day out. Ultimately, I ended up in the changing rooms of an Urban Outfitters with a member of staff jabbing an adrenaline pen into my leg as a first-response paramedic on a bike arrived and I was rushed to hospital.

While I’m as confident as I can be in my capability to keep myself safe, it is always possible that I or someone else could make a mistake or have a misunderstanding. And I also know that, as the consultant I saw after the Urban Outfitters incident told me, being so careful means that if and when I do have a reaction, I probably won’t be able to work out exactly what caused it. It could be the tiniest cross-contamination – and that is, and always will be, a really scary thought.

Allergies are in the news a lot. Sometimes it is people complaining that everyone has one now and it’s annoying for everyone else; the dietary requirement version of “political correctness gone mad”. Every now and again, it’s new research claiming that scientists have figured out why allergies exist and how to cure them (these are the articles that I am always enthusiastically emailed by friends with good intentions). This year, the heartbreaking story of Natasha Ednan-Laperouse has been covered in forensic detail as food-labelling guidelines have come under scrutiny. The 15-year-old died after collapsing on a BA flight from London to Nice in July 2016. She had multiple allergies – to seeds, nuts, eggs, dairy, avocado, apple and banana – and had eaten a Pret A Manger baguette that did not have any allergens listed.

Like every story of a person dying because of an allergic reaction, it made me feel sick. I read everything I could about the case; I needed to understand what had happened. However well adjusted I am (or think I am) to living with an allergy, there are too-frequent reminders of the dangers. And my allergy is not as bad as many – it’s restricted to nuts, but includes peanuts and coconut, neither of which are actually categorised as nuts, but as legumes. People love to tell me this. It’s true, but it doesn’t change the fact that either could kill me.

I have always struggled with the conflict between being aware that I need to tell other people about my allergy and desperately not wanting to make a fuss

I have always struggled with the conflict between being aware that I need to tell other people about my allergy and desperately not wanting to make a fuss. Every one of the hundreds of times I’ve had to ask someone not to have peanut butter on toast for breakfast or sat, blushing, through a plane announcement about a passenger with a nut allergy on board, I have winced. I have apologised profusely to friends and strangers, to bosses and interviewees. It does not sit well with my chronic people-pleasing to often have to impose my needs on others. For many years, my family would enquire about allergies with waiting staff in restaurants without identifying me as the relevant diner. I was almost terrified of being found out.

On hearing I have a nut allergy, people are often fascinated. I have re-told the story time and time again: I first discovered it when I was nine. I went to a birthday party where there was a chocolate hunt in the garden and a kind boy that shared his haul with me. It included a fun-size Fuse bar (discontinued in 2006) that I opened in the car on the way home. It was no more than 3in long and I had one bite. I didn’t like it. My mouth tasted strange and I asked for a breath mint. When I got home, I drank glass after glass of water and brushed my teeth over and over again. I tried to be sick. Eventually, I went to sleep exhausted. In the middle of the night, I woke up hot and itching. I called for my parents, who came in and looked horrified at their crying, wheezing, swollen daughter covered head to toe in enormous, angry hives. They stripped my pyjamas off, immersed me in the bath and slathered me in camomile lotion. They now cannot believe they didn’t call an ambulance, but it was 1997. No one really had allergies; they weren’t to know. The morning after the Fuse bar, my mum took me to our local GP and I had a blood test that confirmed I had a severe peanut allergy. In fact, I had the most severe kind of allergy on the scale they used at the time.

There were some really horrible moments in the first few years. I remember being hysterical, confused and scared of having a skin prick test after I’d previously been told it would have been too dangerous to conduct. My little arm was divided up into sections labelled with blue biro, and tiny amounts of potential allergen injected into each one. The almond section became just a little raised like an insect bite. Then down the inside of my forearm, a graduating mess of swollen lumps: hazelnut, walnut, brazil, cashew, coconut. And then the segment labelled “peanut” rose into a huge inflamed strip of furious redness.

I was part of a trial-and-error generation of allergy awareness. When I was 13, my mum had to come into school to show a teacher how to use my Epipen. She got carried away, took the safety cap off and, demonstrating how it was spring-loaded, ended up triggering the injection which shot gloopy white adrenaline gunk across the room and down the edge of my teacher’s desk. The three of us stared at it in silence. Later, on a school trip, to Flanders and the First World War battlefields, the hotel we stayed in served everyone a grim-looking chicken and chips. Because of my allergy, I was instead presented with a large bowl of cooked tagliatelle served in a solid lump, with no sauce. I remember sadly squeezing a sachet of ketchup over it as sympathetic classmates offered me packets of salt and pepper.

When I was diagnosed, there wasn’t much information available about allergies. For a while, there was a school of thought that the new spate of allergies could be linked to a nipple cream that new mothers had used while breastfeeding. Sometimes it was connected to women who had eaten lots of nuts while pregnant; at other times, women who had eaten no nuts at all while pregnant. Now, things aren’t much different; scientific understanding of why certain people develop allergies is limited. Between 1995 and 2016, there was a fivefold increase in peanut allergies in the UK. There are theories that it could be due to Western diets, environmental characters or immune-system changes. There are several studies exploring microdosing as a way to eliminate allergies in young children and, while it’s exciting that this could reduce the risk of life-threatening reactions, I know that my allergy is with me for life. Even if every doctor in the world told me that I was cured, I would thank them and continue to avoid nuts.

My allergy is too deeply ingrained for me to change now. For more than two decades, I have learned behaviour that keeps me safe and dealt with the accompanying anxiety

My allergy is too deeply ingrained for me to change now. For more than two decades, I have learned behaviour that keeps me safe and dealt with the accompanying anxiety. When I get on a Tube carriage or bus, I scan my surroundings for anyone eating, so I can sit somewhere else. I don’t trust anyone else to read ingredients on packaging; I need to see them myself. As a young teenager, I had regular panic attacks brought on by smelling nuts in classrooms or school corridors. I was (and still am) hypersensitive to the lingering scent of a Snickers, and would become light-headed, distressed, disoriented and short of breath. When people ask if I react to nuts by smell or touch, it’s hard to say because I don’t honestly know how much of that reaction was psychosomatic and how much was physical. Either way, it would result in me ending up in the nurse’s office and collected from school for the day. I need to be in control of my surroundings as much as I am in control of what I eat. When I went travelling, it was carefully planned to be as safe as possible allergy-wise. I went to South America, rather than south-east Asia. I had good Spanish, but in every new country I found a helpful local to talk me through the linguistic particulars of every nut I was allergic to. I know that it was tense for my parents, as it was when I went to university and, for the first time, they were not able to oversee what I was eating and drinking.

I get asked a lot of questions about my allergy (including, “So is it, like, a phobia?” and “How come you don’t like nuts?”). The answers to the most common ones are: no, I hadn’t really eaten nuts up until the age of nine (however weird that may sound, but kids’ snacks in the 90s were more Dairylea than medjool dates). Yes, the diagnosis did explain a number of times when I’d been ill for no clear reason. No, neither of my parents are allergic. Yes, my younger brother is allergic to some nuts, but not all, and a lot less severely than I am. No we don’t really know why either of us have it. Yes, when I have a reaction, I could go into anaphylactic shock. My throat swells up, I struggle to breath, my skin breaks out in hives, I am sick and my head throbs. Yes, technically, I could react if I snogged someone who had just scoffed a bag of peanut M&Ms. Yes, I’ve had to use my EpiPen. Yes, I’ve given it to myself. Yes, it hurts.

And, no, you absolutely do not inject it straight in the heart like in Pulp Fiction.

It’s strange now to hear parents of school-age children tell me about this new allergy-aware world of strict rules about snacks brought into school and the nightmares of supervising a birthday party of intolerances and allergies. Everyone knows what an EpiPen is (the irony being that, due to big pharma, skyrocketing costs and manufacturing issues, EpiPens are almost impossible to obtain these days. Instead, the NHS prescribes the cheaper Jext and Emerade pens).

And it’s even more confusing to now be experiencing a food and drink industry that accommodates dietary requirements more than ever before, but at the same time actually find it harder to navigate my allergy than I used to. The boundaries of ingredients are being pushed, the ethics of food consumption are being debated and innovation is encouraged from supermarket shelves as much as from Michelin-starred restaurants. Much of this progression, especially when it comes to adapting food for certain diets, involves substitution. It’s game-changing for veganism, for gluten-free diets and lactose-intolerant diners, and it’s kind of terrifying for someone who used to know exactly what they needed to avoid. Suddenly, nuts are masquerading as foods that I never had to worry about. Cashew cheese. Nut milk. Coconut water. And when so much of this progression is about substitution and concealment –  taking one versatile ingredient and making it look, taste and act like another – it’s incredibly disconcerting. It feels like the balance beam I’m walking on has got narrower at the same time as people are confusing allergies for intolerances.

Sometimes I take a bite of something that perhaps tastes nutty, like a strong cheese or a very ripe avocado, feel the itch in the back of my throat and frantically search for my medication, just in case

One of the questions I am asked time and time again is “What about stuff that says it may contain nut traces?” and it’s tricky. Truthfully, if I didn’t eat anything that professed it “may contain nut traces” or anything “made in a kitchen which uses nuts”, I would eat very, very little. That sounds careless and, for many people with allergies, it would be. I have decided, based on  my experiences and my knowledge of my own allergy, that unless nuts are in the actual ingredients of a product, I will eat it. That as long as I have asked restaurant staff to check with the kitchen and make notes that I have an allergy, I will eat there. I know my body well enough that I know immediately whether there is something wrong (and I now know to call 999 before I call my mum). I always carry my adrenaline. Always. I buy handbags according to whether or not they will accommodate my pen. When I travel, I put one in every piece of luggage I have.

Any friends, family and colleagues I spend much time with know how to administer it.

There is a part of my brain dedicated to speed-reading ingredient lists, apologising when I’ve had to veto a Thai restaurant and making sure I’m not sharing cutlery with someone eating something I can’t.

Having an allergy that is genuinely life-threatening requires you to trust your instincts in a way that is difficult to explain. Sometimes I take a bite of something that perhaps tastes nutty, like a strong cheese or a very ripe avocado, feel the itch in the back of my throat and frantically search for my medication, just in case. I stay on constant high alert. That is what works for me right now.

@littlewondering 

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Illustration: @lina_illustration
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