Naming My Weirdness

When I was 4 years old, I had my tonsils removed. I don't remember a lot from after the surgery, but I do remember myself starting to refuse foods because they seemed disgusting to me. I said no to almost anything offered. Very quickly my menu consisted only of potatoes, eggs, bread and specific types of pasta.

I didn't grow out of it - no matter how much judgement, mockery or inquisitive looks I got, I stuck with the exact same menu. Imagine someone offering you a plate full of mud and worms for lunch. This is me with an orange, but I got better at hiding my shock and disgust; I simply decline politely.

The most generous perception from others was that I was weird or peculiar. Less generous opinions were that I was behaving like a spoiled little kid and if only I was raised right, I would have been fine and normal. I was mocked constantly.

20 years after the surgery, I came to a realization.
Yes, if I try something new, I'd get truly nauseated and might vomit. But this is true simply because my body is not used to this new food. If I really want to add a new item to my menu, I need to try it a few times and work through the nausea.

I started trying new things in secret. My friend would cut tomatoes for a salad, so when she wasn't looking, I'd grab a piece. I bought a single red bell pepper, sliced it, ate a piece and threw the rest away.

A first taste of a new item was always tough; it's too watery, too dry, too new, too scary, too texture-y, too sweet etc. etc. The following tries were better, as I had less anxiety in me. I was actually able to taste this new thing.

During the year that follows, my menu expanded from less than a handful items to about 15-20 items. I wasn't proud then (self-criticism was always a big part of my inner-self), but I'm so proud of myself today. It was amazing progress.

I had quite a few setbacks since then, but also a few other breakthroughs.
One big milestone was discovering I'm not the only weird person in the world when it comes to food; there's a whole eating disorder that describes folks like me (there are dozens of us!). It's called ARFID - short for Avoidant Restrictive Food Intake Disorder. It's a new diagnosis - only formally added to the DSM-5 in 2013 - and finally being able to name my weirdness was very emotional for me. It was the first time in my life where I got validation that this is not my fault.

There are three high-level presentations of ARFID: Fear based, Sensory based and Lack of appetite.

Personally, I'm experiencing the first two presentations; there will be foods I'd avoid because they scare me but there will also be foods that just don't 'feel' right in terms of texture, messiness, smell etc.

Treating ARFID is tricky, as the presentations and impact on different people are so different, the goals of treatment are also pretty varied. My menu today is still extremely limited; my work is actually more on the self-acceptance side - loving myself as I am today, pushing away the shame and guilt. Interestingly, this not only supports my well-being, but it also enabled me in trying new foods. I wrote about that here.

Being able to name my disorder has been life-changing for me. It's been very lonely until then, but also, I truly thought something was broken in me. So many people around me convinced me that eating is easy and "I could just do it if I wanted".
Now that I have the validation to my struggle, it is so much more manageable and I'm able to see a path forward.