I got an email from a reader back in September. That’s not a common thing for me. It was about coping with ARFID on a school trip and I thought that might be a useful thing to pop up on the blog. Apart from the fact that it’s my blog and I can talk about what I like, how to manage school trips definitely fits into the travel category.
If you haven’t read it, I have ARFID. The short version is that ARFID is an eating disorder, Avoidant Restrictive Food Intake Disorder, which means I eat a very restricted diet. Some people develop this disorder after a traumatic event, often a case of food poisoning or choking. Some of us (hi!) were born with it – either that or the trauma was so long ago that I don’t remember it happening. These days, I’m a grown-up and it’s no one else’s business what I eat but yeah, my childhood and teenage years were a little difficult. I never missed a school trip – but how did I, my parents and my teachers cope with ARFID?
First, I haven’t had a word for it in the last year. Having a diagnosis or at least a name for something really makes life easier. These days, I get to stare someone in the eye and say “I have a medical condition” after an entire lifetime of mumbling about being “difficult” or “special” or “I only eat…”. People take it much more seriously if you can give them a name. I spent years trying on names that didn’t fit. It resulted in arguing because people saw that they didn’t fit. ARFID does fit, for me.
So if you’re reading this because you need help explaining your child’s problem to someone else: it’s an eating disorder, it’s a diagnosable condition. You don’t have to go down the road of getting the diagnosis if you don’t want to, you can use phrases like “pursuing a diagnosis of ARFID” even if the only step you’re ever going to take is to read about it and decide that it matches. That’s still a step along the road. But it might make things smoother if you do have the official diagnosis. Some people will only listen to an official piece of paper. And although even I don’t want to hear it, there are now people who specialise in ARFID who can help to increase the range of foods someone like me can eat. Last time I looked, there weren’t many and they were pretty expensive and I’m not willing to do it myself but you and your child may agree that it’s an investment in their future.
I was lucky. I got on well with the teachers who ran most of the trips. They were willing to listen to me and my parents, to pay attention and to understand. They never pressured me to eat certain things, they never tried to stop me eating things, they occasionally intervened when other people got on my case and in general, they were good allies. And not just to me – I remember on the Russia trip, we went to McDonald’s one day. One of the boys refused to eat there out of principle so they took him to a local market to find some local – vegetarian, if I remember rightly – street food. If you can get a teacher on your side, they’re invaluable. There are plenty of teachers out there who will be unsympathetic, who’ll accuse you of being “fussy” or “unhealthy” and will do everything in their power to make you eat what and when they think you should. Cultivate the ones who are on your side. We used to do exchanges. That meant my teachers had to understand well enough to explain to their counterparts, who in turn had to explain to the host families. That’s a lot of steps where people had to understand and take it seriously and in my case, it worked, largely thanks to my own teachers.
The biggest thing for me was filling my suitcase with as much food as I could carry. I remember the moment of panic on the Spanish trip when I thought they were going to search our luggage and remove my pot of Marmite. Not for security – this was pre 9/11 and also, we were on a coach going through the Channel Tunnel – but because of some import regulations or other. To this day, I tend to travel with a tube of Pringles, a packet of cereal bars and some Babybels. Things that travel well, don’t get squished, don’t take up more space than they need to and will keep me going until I get home. It’s not what I would live on day-in day-out in normal life but in its way, this is a survival scenario. If you can load up your child’s bag with foods they can eat, that’ll make their trip so much easier. Again, you may need adult support, in that finding a suitable time and place to eat it can be difficult. I like to run back to my room or tent and shovel as much in my face as I can, even now. Other people catching you eating outside the given mealtimes can still make a fuss – or worse, demand to eat your precious food.
Another thing that’s worth its weight in gold is the presence of a loudmouthed friend who can argue for you. It’s exhausting having to defend your dietary needs to everyone you’ve ever met in your entire life and I’m eternally grateful to anyone who takes that on for me, even once. Hi Stuart and Nigel, who did that job in year 9 and in university, respectively. Hi all my friends who are so used to it that they don’t even question it anymore.
Did I say the biggest thing was the suitcase full of food? No. The biggest thing is being able to advocate for myself. I was a shy, silent child but the one thing I learned to dig my heels in about very early was food. Mealtimes between the ages of about six and ten were a battleground – me refusing to eat the potato waffles and fish fingers, my mum yelling “If you don’t, I’ll take you to the hospital and have you fed through a tube in your nose!”. The discovery of toast and Marmite when I was about ten made my life and mealtimes so much easier and happier. But by then, I’d learned to flat-out refuse to eat what I didn’t want to. That may be a skill you need to practice and that’s where that loud friend comes in useful. By the time I was at secondary school, I was a master at stubbornly refusing. That, allied to the fact that most authority figures were aware of how not to treat me, means that eating on school and Guide trips – well, it’s not something that sticks out in my memory as a big problem.
Things I do remember:
- We ate in a restaurant on the way back from the Spanish trip. Our waiter brought me chocolates and then we had a photo together. I dimly remember bread. I certainly don’t remember being delivered a plate of food I couldn’t eat.
- On a Brownie holiday, the leader – not even my leader, we were on loan – took me to the supermarket to find food I could eat, and then told the other girls to leave me along when they questioned it.
- Handing over all meals, including the in-flight one, on the Russia trip to Martyn. And also at our school summer ball. Having a human dustbin for a friend can be useful.
- Year 7 camp, a teacher asking if I liked Marmite-covered Mars bars, since I liked both Marmite and Mars bars.
Reframe “like” and “dislike” as “can” and “can’t eat”. People take you more seriously if you say you can’t eat something than if you just say you don’t like something. What I’ve learned from this is that I don’t like cake. I can eat cake but I’d rather not. It’s just too soft. I’d previously thought that I liked all the things I can eat and that’s not true. If you have ARFID, or know someone who does, you know that “can” and “can’t” are entirely correct. I want to like carrot. I like things that crunch. But carrot is like eating solid sawdust and my throat locks up. People who identify better with the ARFID label than I do use “safe foods” and “unsafe foods”. I’m still very new to thinking of myself as someone with ARFID and these aren’t labels I’ve been using and so it feels unnatural to me but they can definitely be useful to you.
Learn a good response to “have you just tried….?” I like “Oh, I never thought about trying new things! Oh, how wise you are, where have you been all my life, to know so much about the condition you’d never heard of two minutes ago that I’ve lived with all my life, my hero and saviour!”. In truth, I don’t need to try. I’ve tried things. But I know, when I look at an avocado, that I can’t eat that any more than you can eat a house brick and we both know that without ever having to put it in our mouths.
Above all, keep going. If that first school trip goes terribly because you’ve got teachers on a power trip, learn from it. Don’t give up. Don’t decide that you can’t do school trips because of your dietary needs. Push the teachers harder. Pack more food in the bag. Make it work better next time. Make it work better the time after that. Get to the point where your dietary requirement is something no one else even notices and you don’t have to worry about. It takes practice and it takes time and it takes things not going perfectly but you can get there.
You are going to have to resign yourself to a couple of things. One is sitting with an empty plate at communal meals. At our work Christmas do a few years ago, we were deciding where to go. I said “Anywhere except Chinese. There’s something I can eat absolutely everywhere except at the Chinese”. They chose the Chinese and one charming woman said “Well, you can still just have a drink”. Now, this same lady loathes and hates Indian food. If we’d chosen the Indian and I’d said “Well, you can just have a drink” she’d have absolutely raised the roof. I learn to thin my lips and give a sarcastic smile.
I do indeed often have a drink while everyone else is eating. Sometimes there’s dry bread. If I’m really lucky, there’s garlic bread. Sometimes I have to wait until pudding. More often, I have to eat at home before or after. Life will never adapt to people like us, we have to learn to adapt to life. But having people who really get it, who are on our side, can make all the difference. Here’s to Di, Mary and Jayne. Here’s to Mr Warbis, Mr Hobbs and Mr Shead. To Esther, Catherine and Tom. To Nigel.
On a slight tangent, getting into Guiding and Scouting can help with learning to cope with trips away from home. My experience in Guides is that our QM, our quartermaster, the person in charge of the kitchen, wants you to have seconds and thirds and will be mortified if anyone even thinks they might be hungry. Therefore, if you have special dietary needs, she wants to know everything about it so she can plan a menu suitable for you. She’s used to dietary requirements. We have vegetarian girls, vegan girls, coeliac girls, girls with food allergies – all kinds of dietary requirements. Mine is one very few people have come across before but it’s dealt with the same way as any other. Give me a list of what you can eat, what you’d like to eat, what you can’t eat, etc.
Particularly as you reach Guide and Ranger age, the girls have more of a say in the menu, so that’s good for ARFID, and you’re more likely to get to do your own cooking, even if it’s only for one meal in the camp. It’s a lot less stressful all round if I can be involved in the preparation of my meal. Maybe that means “can I take out a portion of plain pasta for me before you dump that sauce in?”. Maybe it means “we’ll put out all the food and you make your own sandwiches and packed lunches from it”. The more control I, and an ARFID kid, can have over food, the better and Guide camp is a good place to start taking control.
So, to summarise:
- make sure teachers/leaders understand that this is a non-negotiable medical need
- get teachers and friends on your side
- take your own food
- don’t give up
- you absolutely can manage school trips and other trips away with ARFID.