I have an eating disorder.
No, it’s not anorexia, or bulimia, or binge eating disorder. You’ve probably never heard of it. It’s called avoidant/restrictive food intake disorder. ARFID for short. Also known as Selective Eating Disorder. It was first recognized in the DSM-5, the most recent edition, which came out in 2013.
ARFID makes me unwillingly restrict the types of food I can eat, based on the food’s appearance, smell, taste, texture, brand, presentation, or a past negative experience with that particular food. You could say I’m ‘a picky eater’. You could also think of it as a food phobia. It has nothing to do with body image and everything to do with anxiety and sensory sensitivity.
My main diet is pizza, fries, chicken nuggets, bread (with toppings), and mac & cheese. I can eat carrots, broccoli, and cucumber, but only if it’s prepared the way I’m used to.
ARFID impacts every part of my daily life, but especially my social life. I can’t just have dinner at someone else’s house. I can’t go to just any restaurant. I can’t have different kinds of food touching each other on the plate. I have to carefully plan out my day so that I’m never stuck somewhere without safe foods. When friends or family want to eat with me, it has to be on my terms. Usually, that means we go to an Italian restaurant or at least somewhere I’ve been before.
It may seem like ‘just a mental thing’, but I physically cannot eat most food. My taste buds reject it, and I can’t make my mouth chew and swallow without gagging and spitting the food out.
What makes it even more complicated is that I also have a vomiting phobia. I barely try anything new because I’m afraid my taste buds will send a ‘nope‘ signal to my brain, which makes me throw up just to get everything out. I don’t even have to throw up that often — it might even be years since the last time — but the thought of it makes me scared enough that I won’t try anything risky.
I’ve had ARFID almost my entire life. For me this is all I know, but my mom remembers a time from toddlerhood where I would eat a more varied diet. Over the years, it’s only gotten worse. And before you ask, yes, my parents have tried everything in their power to get me to finish my healthy evening meals, but this is different from just being difficult. It wasn’t until I found out that it was a very real disorder called ARFID, and other people experienced it too, that we realized force-feeding never would have helped me.
Before I got my autism diagnosis, I often got nasty reactions from ignorant people around me. They said I was spoiled for only eating the ‘expensive crackers’. They said I was being unnecessarily difficult. They said my mom didn’t raise me properly. They said my parents should’ve force-fed me more.
It’s very similar to the shit parents of autistic people get for just doing their best in a very difficult situation. For the record: my parents dealt with it in the best possible way, in my opinion. They tried and tried and tried, in lots of different ways, but at some point you have to accept that it might be doing more harm than good, and there’s something more serious going on.
Traveling with ARFID
Traveling abroad is not fun for me. The past few years, I’ve only really traveled to England, and only because I was able to bring some safe foods in my suitcase with me. I can’t go abroad for longer than a week, because my safe food will go bad or run out, and there isn’t much I can buy there.
During my last trip to England, I brought smeerkaas (spreadable cheese), which I planned to spread onto a baguette I’d buy there. I had access to an oven, so I didn’t have to buy a fresh baguette every day and could instead just do all grocery shopping in one go. For dinner, we went to Italian restaurants or McDonalds.
I feel awful when my eating disorder controls the plan for everyone involved, but luckily I have supportive friends who efficiently save their ‘unhealthy food days’ for when they hang out with me.
You can’t eat the way I eat for very long without experiencing physical symptoms. I have chronic stomach pain, which was recently diagnosed as Irritable Bowel Syndrome (IBS). This could be a result of my eating habits, but it could also be a coincidence since it’s a very common comorbid disorder with autism.
I am also always cold. Again, this could be a result of ARFID, but it could also have something to do with sensory sensitivity to temperature. (I’m mostly sensitive to the cold, but I also can’t deal with heat super well. Heat makes me feel uncomfortable and I prefer to stay indoors in the summer.)
In every season except summer I sleep with two to three hot water bottles, a comforter, a cat, two fleece blankets, and thermal underwear under my pyjamas, and sometimes I’m still cold.
Treatment for ARFID
About a year ago, I’d pretty much given up on finding treatment for my eating disorder, because there is simply nothing for just ARFID that is both covered by insurance and not ridiculously far away. Most treatment centers and even eating disorder clinics only treat anorexia, bulimia, and binge eating disorder. There is no evidence-based treatment for ARFID at the moment.
However, after my autism diagnosis, many doors have opened for me. Although most autism-related restrictive eating therapy is focused on children, my future therapists (I’m on a waiting list) assured me they could start working with me on this since it’s a common problem for those with autism, so they have experience with it.
Some people recover entirely, and some improve to the point that their body is at least not falling apart completely. I don’t know yet which category I fall into, and although I hope I’ll someday be able to fully recover, I have a feeling I’m never going to be normal when it comes to food.
If you have any questions about this topic, feel free to send me a message anywhere. Hopefully more people knowing about it will mean there will be more studies done and eventually more treatment available.