Living with ARFID: My eating disorder makes it impossible to try new foods

Let’s clear something up to begin with: Nothing bad happened. I never had a traumatic experience that left me with a food phobia. The simple truth is that my relationship with food has never been a healthy one, and I have always been aware of this. But when I was sixteen, I finally had to come to terms with the fact that I have an eating disorder and I have for most of my life.

I can’t remember a time when I had “normal” eating habits. I have something called ARFID (avoidant/restrictive food intake disorder) or SED (selective eating disorder). Many would call it picky or fussy eating, but I have always hated being referred to as a “picky” eater. Food makes me feel nervous and nauseous, and this restricts me in all kinds of ways. I would never choose to be this way.

I had always just accepted that I wasn’t a “foodie,” and, for a long time, I thought this was fine. My family enjoys trying new foods and cooking together, and this is something I’ve grown up around, but never wanted to be a part of. My diet has always been very limited, and my parents took me to the doctor several times when I was young. They were told it was “just a phase” and I would definitely “grow out of it.” I’m now 18, and I feel like if I was going to “grow out of it,” that would have happened by now.

As I got older, my fear of food started to mean I would avoid any social plans involving food. This meant I wouldn’t get to join in with the pizza and movie night my friends were having, eating out was a no-go, and even eating lunch in the cafeteria at school was a nightmare. I was so embarrassed about my problem that I never confided in any of my friends about it, and was constantly making excuses. Eventually I was invited less and less to hang out with friends outside of school.

I really hate when people blame my parents. My parents tried everything to get me to eat, but I wasn’t interested. The “no pudding” punishment didn’t work very well on me, since food just has never excited me. And please don’t give me that “if it was my child” talk; you have no idea what you’re dealing with. Having a five year old who will only eat chips and baked beans had to have worried my parents and I feel for them. And in case you’re wondering if it’s genetic, it’s not. Both my sisters are really into trying new food. With no easy explanation for why I am the way I am, people often don’t understand that ARFID is an eating disorder, and I’m not just being “fussy.”

It’s hard to talk about my ARFID because I don’t enjoy being made a fuss of, and I don’t like having lots of attention on me. When I was in primary school, being invited to a friend’s house for dinner made me incredibly anxious. Someone’s mum would ask what she could cook me for tea, and then there would just be a long, painful pause. The most accommodating would list other options, and I’d usually have to say no to all of them. I felt so rude, which was followed quickly by embarrassment. And then came the thought-spiraling:

“Oh my god, what if my friend then tells everyone at school that I went to her house and then wouldn’t eat anything?”

“Everyone will think I’m a massive weirdo if they find out I don’t like pizza!”

“I won’t have any friends and no one will want to hang out with me.”

In primary school, all anyone wants to do is fit in, and being scared of food didn’t make this easy. At the end of term, everyone would bring in party food to school. Most people looked forward to it, but for me, this was a total nightmare. I’d try to convince my mum that I was too ill to go into school, and when that didn’t work, I’d look for any excuse to leave the classroom when it was time to eat. I absolutely hated being the weirdo in the corner just looking at the few crisps I had put on my paper plate, knowing I wasn’t really going to eat them. I have never had the excitement about food that other people seem to have.

And it’s not just eating that causes a problem. Even being in the same room as food can make me really anxious. When food has a strong smell, my body’s reaction is constant retching until it goes away. I’m never sick, but retching makes it fairly difficult to breathe, and if I can’t get out of the situation, this quickly gives way to a panic attack. Even looking at certain textures can trigger a reaction. I have my safe foods: bread, potatoes, rice, baked beans, raw carrots. It’s a short list and anything not on it is off-limits for me, and nothing, not even a million dollars, could convince me to try anything else when my body shuts it down.

When I was 16 and university was suddenly around the corner, I started to look online for answers of how I could make myself “normal.” That’s when I discovered that ARFID was a recognized condition and there were other people like me! This news was both exciting and horrible. Eating disorders are still a bit of a taboo, whether we like it or not, and to suddenly realize I had an eating disorder, and had it for the better part of sixteen years was something that took me a long time to process.

I know that some people still dismiss ARFID as not being a “real” eating disorder, but it’s important to understand like any other medical term, eating disorders can vary in severity. It’s still not something I can talk about as openly as I’d like to. I’m ashamed of it, but I know I shouldn’t be. I think it’s so important to talk about ARFID now, and let people know that it is a real problem for a lot of people. Most of the treatment is in America at the moment; I have emailed round a few UK clinics, but because the diagnoses is still pretty new, no treatment is guaranteed success. At the moment, I’m happy to wait.

In the meantime, I’m taking steps to help myself, and I’ve come up with coping methods to try and avoid retching and panic attacks. Now, there are good days and bad days in my relationship with food, but I’m getting there. Baby steps!

(Image via Shutterstock.)