I had the pleasure of interviewing Daniel Kelly, the creator of the May Contain podcast, one of the most popular allergy podcasts in the UK. Previous interviewees include; Supenanny, Jo Frost, disability gymnast, Natasha Coates and Olympian, Mark Foster. We talked about allergy anxiety, what it is, and what, if anything, can be done about it.
Tell me about the beginning of your allergy journey.
I was five years old when we realised I had allergies. I was coming back from school and my mum gave me a chocolate bar containing peanuts. As far as I’m aware, it was the first time I’d been given nuts. I took one bite and I spat it out all over the back seat of the car. Of course, my mum went mad, but within minutes I had hives across my neck and my whole body. Mum rushed me to the emergency doctors, where I was given antihistamine. When the hives calmed down, they did skin prick and allergy tests and found out I was severely allergic to peanuts and tree nuts.
In your podcast, you talk about anxiety related to your allergy, tell me about that.
I think anxiety has played a massive part in my life, which comes from trying to keep safe and stay alive. I work from home, so I cook for myself, which reduces the risk of anxiety. But when I’m eating at restaurants, that’s when I get anxious. I’m constantly checking my neck and my body because I’m worried that I’m going to have an allergic reaction to the food. I’m always asking my partner; “have I got a red rash on my neck?” That’s got worse recently. Sometimes I come out in a rash on my neck, but it’s a heat rash because I’m getting myself so worked up about the possibility of having a reaction. Trying to distinguish if I’m having an allergic reaction or if it’s a panic attack and that’s causing the red rash is difficult.
How do you try to manage that anxiety whilst eating out?
I always ring the restaurant beforehand and make them aware I’ve got a food allergy. It helps if the restaurant has an allergy menu online, knowing that there is some sort of allergen understanding. I think it’s important to speak up and always go with your gut feeling as well. If you feel like they’re not going to take your allergy seriously, then walk out and find another restaurant where they’ll take responsibility and accountability for your allergy.
How do you feel about may contain labels?
One memory from when I was about 14 is being at an Anaphylaxis Campaign (now Anaphylaxis UK) workshop, where they were talking about may contain labelling. There was a picture of a regular Cadbury Dairy Milk bar and you could clearly see the nuts inside it from the cross contamination. I see that picture in my mind every time I see a may contain label. Since then, I’ve never risked it. If I do eat something accidentally that has a may contain warning and I don’t realise until afterwards, it panics me and the anxiety kicks in again.
Have you ever had a near miss and if so, what happened?
Yes. It happened recently when I bought a Hello Fresh meal kit to cook at home. It was mostly fresh vegetables, and everything was in pre-sealed packages, labelled with ingredients, even the spices. It appeared to be fine, so I made the meal and ate it. I then realised the recipe sheet had a may contain warning and that the kit was manufactured in a site that handles allergens including nuts. My anxiety went through the roof. I thought my neck was swelling up and I felt like I couldn’t breathe. I’ve never administered the EpiPen in my 29 years since diagnosis, but that day I used it. The ambulance came and I was taken to the hospital for four hours. Looking back at it now, it could have been a panic attack. That said, I recently had a doctor on my podcast who said that my symptoms could have been anaphylaxis and I’d administered the EpiPen at exactly the right time, preventing anything further. I guess we’ll never know, but it shows how much of an impact anxiety can have. At the time I honestly thought I was going to die.
Do you have any other tips for managing allergy-related anxiety?
The anxiety around having a severe food allergy creeps into everyday life. I’m trying to manage it and seek external support, possibly with cognitive behavioural therapy (CBT.) One of my podcast guests talked about box breathing too. It’s where you imagine a box, you breathe in for three seconds, hold it for three seconds and breathe out for three seconds. If you do that in cycles, it can really help get oxygen into your lungs and help you feel calmer. But managing anxiety is an ongoing learning journey.
So how did you start May Contain?
It started at university, I studied graphic design and for my final year project I created a magazine called May Contain. I did things like take the EpiPen out the medical context and put it into fashion contexts. I did photo shoots with girls with the EpiPen in their clutch bags and guys posing at a cocktail bar with it. The local newspaper wrote about my allergy magazine and it went viral overnight. This was the beginning of May Contain. Feedback is that it’s so different to the other allergy blogs and podcasts. It’s less clinical and more relatable for parents and teenagers. I’m trying to talk about allergies in a relatable way and normalise them.