Hayley on Life with Selective Eating Disorder (SED/AFRID)
Updated: Feb 26, 2019
Happy Sunday, fellow Spoonies! After a week away we're back to our regular Sunday blog, and this week it's a long one to get your teeth into! As you may or may not know, tomorrow (February 25th) is the start of the UK's Eating Disorder Awareness Week. What you also may not know is that up until a year ago, our founder Hayley had spent most of her life struggling with her own eating disorder alongside her ME/CFS. So here, for the first time, Hayley has decided to publish an honest account of what she went through during her struggles with Selective Eating Disorder, one of the lesser known and recognised eating disorders, and how she dealt with it. At the bottom of the page you'll find a list of resources you can access if you or somebody you know is having issues with relationships with food.
It’s quite a strange feeling sitting here typing about myself having an eating disorder. Despite living with one all my life, it wasn’t until November 2017 that I realised I actually had one, even though for as long as I can remember there have always been “issues” with food. If you’ve been following Spoonie Village for a little while you’ll know I live with ME/CFS and I’m pretty open about talking about that and how it effects my day to day life however, food isn’t really something I talk about much other than the occasional mention of my approach to healing via a holistic route which, naturally, includes food. The reason I don’t discuss this side to things much is because it’s still all fairly new. My own personal feeling about sharing my journey or experiences is that often it’s only when I reflect back to see how far I’ve come that I can truly express and explain what I went through. Hopefully this account can provide some information that can help others heal. Often with ME/CFS experiences I share or take lessons from a place of when I first got ill and what happened from then on. It’s just the way I process and feel about sharing healing experiences, that once I’m at a point of feeling I have healed somewhat then it seems the right time to share it.
So here we go. I had never heard of its official title and even now there will be many people out there for who it’s often passed off as fussy eating. However, SED/AFRID (Selective Eating Disorder or Avoidant Restrictive Intake Disorder as it’s also known) is far more complex and life altering than choosing not to eat certain bits of food because they look a bit funny. It’s important to make clear before we go any further that this isn’t about “dieting” or restricting food intake like many other eating disorders. My desire to eat lots of different foods was constantly there, it’s just there was a block to doing it. The restrictive side isn't about weight loss or associated with how I viewed myself. I simply couldn’t look at some foods never mind touch or taste them. Growing up I was always the fussy one, my brother would question me repeatedly “how do you know you don’t like something if you’ve never tried it?” It’s a valid question when you don’t have what is essentially a food phobia, but in my case the issues were more I didn’t want to try it because it was either on the “dangerous food” list in my head (although I wasn’t aware this existed then). Or, as the therapist I later saw explained it, “why would you want to try that when your brain is telling you if you did try it would be like eating gravel, no one wants to eat gravel”. Below I’ve written an outline of how it impacted my day to day life as anyone who has had issues with food will know it’s a massive part of our lives, not just for health but for socialising and it permeates through every aspect of our lives whether we realise it or not.
I would learn the menus of places to eat. At regular places I’d not need to look at the menu, I’d just know what I could eat. A menu change by a chain restaurant would cause so much internal stress, though I’d rarely vocalise this, I never wanted to make a fuss about it, I'd just work around it and adapt (I've learned I'm a bit too good at adapting) except maybe if I was with my mum. Also if I were invited out to a meal I’d have to know where we were going beforehand and check menus to ensure there was something suitable. This wouldn’t be shared it would all be an internal stress.
Holidays were a bit of a nightmare. Usually we managed, a typical safe food for me was what you’d probably expect a child to eat, so fortunately it was only as I got older and went abroad the issues really kicked in. I have gone times where I’d not eat properly and just snack the whole day because despite my Mum’s best efforts there just wasn’t anywhere to eat that matched my “acceptable food” list. It’s important to say here too meals didn’t feature in my mind. Food was food. If I couldn’t eat anything else then desert was fine because it was food I could eat. Only now do I appreciate the point of having starters, mains, desserts. Looking at a menu in the past was just about finding something that was ‘safe’ and acceptable to me, although I wasn’t aware of this at the times it was happening.
If I had ordered food and it came with something that’s usually on the menu but I’d not asked for, such as the tomato, a mushroom, the peas or a side salad, it would stress me out to even see it on the plate. Not because I’d think of eating it but because in my mind the meal was no longer safe to eat, it has essentially been contaminated. I’d ask them to remove it as I had pointed out when ordering I didn’t want it. Then often, they’d done a scrape it off job, so it was the same plate. This freaked me out because I could still either taste or see traces that the food was still there or has touched the food that was left. Again it was internalised and I’d just somehow muddle through with it.
I would literally avoid about 80% of the supermarket when shopping. I knew aisles I could go down and which contained items I’d never look at. It wasn’t until after the therapy that I realised how big the food industry was or in fact how much food supermarkets sold. It sounds totally crazy, but when living it this was just my normal. If I had to go down an aisle where there was food I didn’t like I just wouldn’t take it in, almost like I just didn’t see it or the floor suddenly became very interesting.
Senses and Food
The smell of certain foods near me made me want to physically move away and often I would. I’m not talking those smelly unusual things. I’m talking the smell of my mum peeling an orange next to me. I couldn’t even touch certain foods, I’d avoid all contact with them across all my senses.
Fruit and juices (freshly juiced) would smell awful, I can’t describe or liken it to something it just was foul and made me literally turn my nose up and need to move away.
If I forced myself to try something (which I often did) I literally lost all ability to swallow and would heave, I can only describe it as my whole body rejecting it completely.
Things felt as though they had very odd textures. Now I really don’t get any of them but one example is I forced myself to try a blueberry and the only way I can describe it is it felt like tiny little beads in my mouth, almost plastic and nothing at all like I’ve experienced before.
Meals at people’s houses were no fun because I often felt so embarrassed that I couldn’t eat ‘normal’ meals and although people really close knew I had “funny” tastes I used to feel guilt, shame, and so awkward when people decided to cook. Even when people knew my “okay to eat” list I’d feel almost like entertainment often, quizzed over what I could eat, why I didn’t like it or, I’d end up eating something totally different to everyone else which was great I could eat but made me feel so much worse stress wise.
Takeaways were just as bad, anything from a Chinese always came from the sides menu rather than an actual main meal (as a child I vividly remember picking out every beansprout from the chow mien because I didn’t like it).
Work Places/Working lunch meetings
When I began working, very often where I worked we’d have lunches or buffets. There was a lot of food and hospitality towards me which was lovely however it was such an issue for me. I would even consider avoiding them completely for fear of either the food itself, the not knowing or the fact I’d have to explain to people why, despite there being an abundance of different sandwiches, nibbles etc I was sat there with my plate half full of ready salted crisps. You even just say things like “I’m not hungry, I’ll eat later, I’ve already eaten” to avoid the embarrassment of telling people you can’t eat any of it and have no reason why because you have never actually tried to eat anything like that before either.
When it’s strangers you’re having to eat with, people who you’ve never met or probably never will need to again, it was the most awkward of all. I’ve had times where I’ve become the centre of attention all because of what’s on my plate. Again, because you end up eating something totally different to the group it’s obvious and I’ve often felt a bit like a person in a Victorian freak show where people reel off lists of foods and meals to see if I like them. They ask where it all began, being quizzed over my mother’s weening habits when I was younger, laughed at and even told you’re just fussy and not helping yourself.
Now don’t get me wrong, I understand why. It isn’t normal and even when I look back now I wonder how the hell I managed to survive so long with what I ate. But I wanted to show how much this impacted my life for as long as I can remember, and these are just a few of examples I could give. I had school dinners as a child and have very vivid memories there too. It’s not really until I healed that I realised how much internal stress I’d been going through with this problem, not only this but dealing with these kind of encounters and the pressures of explaining it, attempting to try new foods out of politeness or not wanting to offend someone who has spent time cooking for you only adds to the whole issue and through reinforcing it makes it worse.
The final straw (almost literally)
The thing with this disorder is that it’s not just a case of choosing not to eat certain foods. It’s literally the feeling of danger and stress about these foods. You could have offered me a million pound, bribe me with my deepest desires and I’d still have either not even got to the point of putting it in my mouth or heaving if I did. Nothing made a difference. I’d beat myself up mentally every time, comparing myself to people like my Mum who I could see eating a bowl of fruit and I couldn’t even bring myself to touch it never mind eat it. I always knew there was something wrong. I desperately wanted to eat healthier foods but whenever I did they made me heave or the smell alone made me gag. The final straw came when I’d realised I was gluten intolerant and so the list of foods I could eat were even more severely limited (not going to lie, I lived off a lot of plain pizza, pasta etc). I decided that if I can’t physically eat fruit then I can drink it juiced, surely? I ordered a pack of what was a juice plan, I geared myself up big time, kept telling myself I could do it, day 1 came I was excited convinced this would be it and boom back to square one. Opened the bottle sniffed it and felt immediately sick! At the smell of fruit! I was like, “no, come on, just try it.” I used a straw. The minute it hit my lips I gagged. I deliberately held it in my mouth, convinced I could just shove it down my neck. It was like my throat had forgotten how to swallow. It was hell. Eventually, in one big revolt from my body I had to run to the sink and spit it out and stood there defeated, deflated and cried my eyes out. This is the point I knew enough is enough, there’s something more than being a bit weird with food, this is a major issue. I was 27 and I couldn’t drink a bottle of juice without heaving. So I did what most people do these days when you have problem you know nothing about. I headed to google. From this point on I truly believe I was guided to the therapist I eventually went to see.
I found Dr. Felix Economakis who is an expert is SED/AFRID. The wealth of information he provided made me finally go “ohhhhh, yeah. That’s me”. I watched a video where he explained things and it literally felt like he was discussing me. I knew this man could help me. He had answers and above all he just got it. We all know that feeling when you hear someone talking about something and you just know, they get it. There were even videos from sessions he’d conducted where people and children just like me couldn’t touch food or have it near them before and then after were tucking into it. I had hope and I desperately wanted to be one of those people. The treatment is designed to be a one off session and uses hypnotherapy, for me it was. With my background in Psychology I had no issue with the treatment option. I’ve always been fascinated by it and due to it being heavily linked to the subconscious it made sense to me to try it, since rationally I couldn’t explain why I was this way about food. So I sent an email. The great part was Dr. Felix was also very aware of ME/CFS and offered a session to not only help the food problem but also to help with the ME (I'll talk about that another time).
I could have had a skype session but personally I felt I needed to be in the room physically for it. So with my ME/CFS the idea of going to London for treatment was huge. I knew I needed to but the exertion of doing so seemed too much. So I researched every last detail and planned with my Mum to allow minimal physical activity. It was tough, but everything went as planned and I have no regrets what so ever. In my humble opinion, Dr. Felix is a miracle worker. As a spiritual text called A Course in Miracles defines, “A miracle is a shift in perception from fear to love”. And he did just that. My perception of food was filled with stress resulting from years of shame, guilt and above all fear. I left that office with a love of food pretty much immediately. Before getting the train back we stopped at a small Marks & Spencers to grab a drink and suddenly I can only describe it as being like a filter was lifted and I looked around the entire place amazed at what you could buy and what types of sandwiches there were. I was genuinely excited that food existed, it’s just I had no idea what it tasted like. I was now a fully fledged food explorer and I couldn’t wait. All perfect, right? Well, almost, because the story doesn’t end there…
The irony of finally healing