Growing up with severe allergies and flying the nest

By April

Hi, my names April and I’ve had anaphylaxis since I was four years old.

As a toddler, I was like any other child, I loved play group and snack time and my mum would always stand at the edge of the hall with some hazelnuts and dried apricots from the fruit and nut stall in town as they were my favourite go-to snacks. There was nothing at all to suggest I would ever develop a life-threatening allergy and that these would soon be off the table (literally) forever. Everything in my life pretty much changed in an instant. My mum and I were in the living room together and I remember she had some chocolate-covered nuts in a gift box. Being the ever-inquisitive kid I was, I asked her if I could try one. My mum didn’t think anything of it and gave me a chocolate covered Brazil nut. Within minutes I had stopped dancing around the room and had run back to my mum with a swollen lip and a nasty cough. Luckily, my mum was savvy and recognised the symptoms to be serious and called for an ambulance. I am lucky in the sense that I don’t remember much after that, but I am told it was horrific.

Life after my diagnosis

Childhood was different from that moment on, I guess. I had gone through the testing ordeal, which had confirmed I was allergic to all tree nuts and peanuts. Allergies back then were uncommon and as a result, birthday parties were hard to navigate, for example. Parents mostly understood as allergies were up and coming but caterers, soft play centres etc would struggle with it. As a family, I only remember going out for dinner maybe a handful of times to the same chain restaurant as chefs generally just didn’t understand fully or didn’t want the risk. Same goes for school – sometimes I was just excluded altogether from taking part in certain activities or trips because of the stigma and risk attached to my allergies when really it was just a lack of education.  

An example that sticks in my mind: I remember so vividly that when I was about 14, all of the students were going to Cologne in Germany on a field trip and I was told flat out that I couldn’t go because I was too much of a risk. I was the only person in my class therefore not going. This was the first real experience I had of exclusion and it knocked me a bit. My mum actually spoke up on my behalf after an in depth discussion with me, and after several meetings between her and the school I was allowed to go. She thought it was important that I was given the opportunity and not defined by my allergy, and whilst we all accepted it was a risk, it was important to me that I was allowed to embrace my medical condition and look after myself in the same way I did every day anyway. My  school eventually decided that they trusted me enough to look after myself and take responsibility for my own actions so they came up with a plan/compromise (to this day I don’t actually think they were expecting me to actually agree to it all). 

My first school trip abroad

My mum and I had to sign a waiver that they would take no responsibility for me whilst I was on the trip and that if I put myself in a situation of danger that I would be sent home immediately; fair enough, we said and signed the forms, a real sticking point for me. The group went to the chocolate museum, but I wasn’t allowed to go in (the school didn’t want me to, which was fair enough – I didn’t mind). I had to sit in the café with the deputy head teacher no one liked with a bottle of water and a few hours of awkward small talk. Even with that said, I was SO HAPPY and SO grateful to have been able to go on the trip. I had a really good time for the most part with my friends, learnt so much about the town and the general history and most importantly I stayed safe/lived to tell the tale. I didn’t eat hardly anything other than Pringles because I didn’t know the language at all back then and the teacher wouldn’t help me translate (I think it was a *tough love* situation!). I think this negative attitude towards my allergies sort of set the tone for me growing up, sadly. Fun fact – I returned back to Cologne (along with other places) – alone – when I was 18 in a bid to really ‘stick it’ to my past experiences. It was a trip that was so liberating, changing my past experiences into more positive ones. 

 Looking back at the subject of school –  I don’t know how I stayed safe with school dinners and cross-contamination from food fights and sharing bottles/fountains etc – maybe it was sheer luck at some points – but I had a great set of ‘medical room buddies’ (ranging from diabetics to epileptics – we were all tarred with the same brush back in the day) and although I was the only person with a severe allergy in my class (both primary and secondary school!), we made it through and looked out for each other.

Becoming more independent

At 16 I started to grow a little bit more independence. I left school and started working full-time as an apprentice in an office. I’d buy my own lunches/snacks. It was at this point I developed my kiwi allergy. I kept trying kiwi in the hope I was just sensitive to it – in the same way everyone is to pineapples. I had my paediatric sign-off 2 weeks before my 18^th birthday when they confirmed my fear – kiwi was one of my top 3 allergens and my nut allergy was likely to never phase out. The list of allergens/unsafe foods grew bigger and my anxiety over food grew with it. I knew I was allergic to baked beans from my primary school days (however, to this day no one will test me for it!).

By 18, I’d entered the world of late nights/3am food choices/dating/socials… all of which came with their own risks, let alone all together and mixed with alcohol and peer pressure. Again, I had a class set of friends who’d always look out for me. However, as my independence grew, I couldn’t help but feel my world was closing in. My brain was my worst enemy and I was learning about dangers I’d never even thought about before – i.e. nuts in alcohol (the GINdemic!), situations like weddings I was getting invited to, could I use the soap at the service station…even down to hugging people who may have used nut oil in their shampoo!

Going out for food – the dilemma

I’d never really gone to a restaurant as a child and now I was launched into adulthood with no real confidence around my allergies. Sometimes I’d go out for a meal with friends and not have anything to eat as I didn’t have the confidence to navigate it. Even now, sometimes I will avoid going out for dinner if my head isn’t in the right place and I still get shy and almost embarrassed to tell wait staff of my allergies. This is not because I am ashamed of my allergies, but more the social aspect of facing that rejection in the same way I had experienced as a child. It was suddenly as if a big black hole had been opened up as I became more and more knowledgeable. I actually ended up seeking a therapist at one stage to talk out my fears and help me rationalise them – there is no shame in doing this if something is affecting you and preventing you living the life you want to and I implore anyone feeling the same way I did to give it a try!

There is good news on the horizon, however, and that is that people are generally more clued up nowadays and restaurants attitudes are beginning to change and adapt. I’ve had some really negative experiences in early adulthood, but as time goes on I’m rewriting those bad experiences with good ones. One fantastic restaurant was Cheers in Bury St Edmunds, who were absolutely brilliant understanding allergies. I thought from the outside looking in that they would never be able to cater for allergies in such a small kitchen/restaurant but to my surprise they did cater superbly and every time we are in that neck of the woods I always try and make an excuse to visit!

Meeting my partner Toni and moving to Newcastle

Fast forward a good few years and I met my partner, Toni. She’s brilliant on the allergy front and is so careful to not bring nuts into the house or eat them at work etc… After a few years and a few house moves together, we made the leap to move 300 miles across the country and settle down in the North East of England. It was really scary at first, and I always have the fear of ‘what if something happens to me, my family are at least 4 hours away’, but it’s something I am learning to deal with and change my mindset about. On the first day here, I made an action plan and rang the nearest hospitals to see how they would deal with an anaphylactic reaction and therefore which hospital would be best for me to go to if I had the choice/was already in a car etc and I found that super helpful in settling my mind and giving me the reassurance I so desperately sought. We’ve been here just under a year now and luckily I have not had any reactions.

The first weekend, we had free we ventured out to The Lily Tree Bakery in Newcastle (I had seen them on instagram before moving up and was desperate to try): they’re an allergen friendly bakery (gluten, nut/peanut, sesame and soy free!) ran by really friendly people who are so knowledgeable about allergies – the only saving grace for my waistline is that they are a little bit far from where I live. We’ve also been to Wagamamas at the Metrocentre (my first time at a wagas, and surely won’t be my last!)  The most recent place we visited was My Delhi in Newcastle. I’ve written in depth on this website about my experience there, and I encourage any nut allergy sufferers to try it out!! It was the first place where I truly felt welcome at the table and the allergy situation wasn’t made into so much of a big deal. Of course you want enough of a deal about it so that it is taken seriously, but not so much of a deal that you feel constantly watched as you eat your meal! (I’ve had that a lot, too!).

Thank you

I hope that as time goes on I can visit a few more places to eat and slowly but surely gain a bit more confidence. It’s a constant battle against my mind which is reminded of past experiences as well as learning to live a little, let my hair down and enjoy life. I hope that in time anyone will feel welcome anywhere they visit – I know we are a way off as yet but let’s hope that with a little awareness and a website as useful as this that collectively we get there in the end!

All it takes is education and understanding – and we are heading in the right direction! 

Thank you for reading my blog and I hope you enjoyed learning about my story and journey,

April xx

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