When you have allergies you need to trust yourself

An interview with my Aunt

No matter who you are, having strong role models can set you up for a positive life. Throughout my life my allergy role model was my aunt. My aunt has a partner, raised 2 children (without allergies) and is a #boss in a her career. I never saw her complain about her allergies, she is very confident (or looks confident) when talking to staff at restaurants and she allows people to cook for her! #goals.

Finally I decided that I wanted to ask her my burning questions, about her allergy journey.

I hope you enjoy!

What are you allergic to? food, skin.. anything else?

Food - peanuts, tree nuts, pulses (lentils, chick peas, beans, soy etc), shellfish.

Skin - sensitive to wool, nickel, detergent, cats and dogs, any products with perfume, I have to wear gloves for most household tasks. Also get itchy eyes from pets, perfume and cleaning products.

When did you get diagnosed?

Interesting question. I was in hospital for several weeks as a baby due to severe eczema. So that I suppose was my first 'diagnosis' although it wasn't linked to an allergen at the time. But in terms of actual allergy testing, the first time I ever had allergies tested was as an adult, after I'd already had many allergic incidents. There simply wasn't the awareness of allergy when I was growing up, so I guess I diagnosed myself. I always knew I hated peanut butter, and avoided nuts as they made my throat itch and made me wheezy. My first very serious reaction was aged 15 and I knew immediately that it had been caused by a biscuit I'd eaten at a friends house which had contained nuts.

Did you find it hard?

When I finally went for allergy testing, the diagnosis helped me as it confirmed what I already knew, although it was scary to know how serious it was and that I could die. The consultant who saw me asked if he could take extra blood so he could show his students, as it was the most severe peanut allergy he'd ever seen!

You’ve been with your wife for over 30 years, how do you trust someone everyday? Especially to cook with?

You have to trust other people if you live with severe allergies which can be scary, so it's important to create that trust with people you share your life with. Our family home has always been nut free, and my wife (and our sons when they still lived at home) would never cook with nuts in our kitchen. With friends and extended family, however well I know them, I always make sure to remind them about my allergies - either if they are bringing food to our house, or if they are cooking for me at their house. It's important to be clear, and also make sure they feel they can ask me and not feel awkward if they are not sure about any ingredients.

How do you deal with work functions? 

That's probably the most difficult for me. If I can I will bring my own sandwiches eg for a lunch meeting. I always let them know in advance, but I've had a lot of occasions when the special meal I've ordered hasn't appeared or they give me a generic 'allergy' meal but isn't suitable for me. If I have the slightest doubt I just don't eat the food, which is why I tend to have a range of snacks in my handbag. I travel a lot for work, and especially if it's to a country that uses a lot of nuts or pulses in cooking it can be quite scary - so I usually stock up my suitcase with tins of tuna, pitta breads and oatcakes, so that I always have something available that I feel safe eating. I have my allergy list translated into different languages, so that I can just show this to catering staff, or I send detailed instructions to the hotel and conference organisers in advance. I try to stay in self-catering places where possible, so I can prepare my own food.

““Trust yourself, and focus on what you can eat rather than what you’re allergic to””

What do you eat daily?

I hardly eat any processed foods, usually cook everything from basic fresh ingredients. So porridge for breakfast, a cheese sandwich for lunch (home made bread), and then something like fish, vegetables, salad, rice, chicken for evening meal.

She also makes amazing ice cream from scratch! Runs in the family.

How do you deal with people who don’t understand?

We talked earlier about trust and I think this is the key thing for me, and communication is essential. I have learnt to make a quick judgement about whether I can trust someone (eg a server in a restaurant), and if I don't feel they have understood properly (either through language difference, or just not listening to what I've said) then I will ask to speak to a manager, and if I'm still not happy I will just not eat anything. I try to keep calm and rational as this helps my judgement of the risk.

Have you had an anaphylactic reaction?

I've only had one major anaphylactic reaction which was about 25 years ago. Luckily I was close to a hospital and went straight into A&E. After that I became super vigilant and have managed to avoid another such serious incident.

What is something you want non-allergic people to understand?

Listen and respect what the person with allergies is telling you. Don't assume that you know what they are allergic to, how their allergy manifests itself, or what is safe for them. Let them explain to you and listen to what they tell you, and don't try and persuade them to eat if they don't feel safe.

How many auto-injectors do you carry with you? Which type?

I carry two epipens always

Have you gained or lost any allergens?

Not as far as I know! I wish!

Have your guards/boundaries reduced over time?

There was a time when I was super cautious after a close friend died on a plane after eating nuts and after that I just didn't dare to eat out anywhere for a long time.. in fact I still don't eat on flights, even long haul ones. But I gradually regained confidence about eating out again. In general my boundaries are very consistent, and I've lived with my allergies for so long that I am very used to this way of being, so I hardly ever take risks or try new things.

If you could get rid of one of your allergens, what would it be?

Peanuts - just to know that I'm not going to die from a peanut would be wonderful.

What is your favourite meal?

Depends on time of day, season and where I am, so I don't really have a favourite meal as such. Anything fresh and the simpler the better.

What is your advice for people who are struggling with their allergic diagnosis?

Trust yourself, and focus on what you can eat rather than what you're allergic to. Carry safe snacks wherever you go so you don't get caught out and hungry. And be clear with people and not embarrassed or feel you have to eat anything to be polite or please anyone else if you are not confident it's safe. Try not to get distressed and you will learn to live in peace with your allergies.

““Carry two epipens always””