Living with ARFID: What It’s Like and What to Do About It

I’ve done a lot of difficult things in life. I’ve grown up with an alcoholic dad, who became schizophrenic when I was a teenager; and I saw my grandmother struggle with dementia for several years. However, the most difficult thing I’ve done in my life by far is living with ARFID.

ARFID (Avoidant Restrictive Food Intake Disorder) is an eating disorder that prevents those who suffer it from eating certain foods. It’s an intense kind of phobia, which can manifest itself in various different ways. It’s a serious disorder that has nothing to do with picky eating. It’s recognized as such by the medical community, and it’s listed as an eating disorder on the DSM-V, the bible of psychology. Here is a therapist explaining what ARFID is and what it isn’t:

My Personal Experience

I don’t have much memories of my childhood, but I remember perfectly the first time I had trouble to eat a food. My mum tried to feed me a pear, which I had previously eaten, but I could just not stomach it. I think I was around two or three years old. Unknowingly, I had just started a kind of hell that I would not wish upon my worst enemy.

From that point on, many of the foods I previously liked I could not bear to eat. They made me nauseous, to the point I wasn’t even hungry anymore. I also developed a strong aversion to mixing foods. I could not eat anything such as a stir-fry or a paella. All the elements of my plate had to be clearly separated from one another, and I had very few safe foods. As you can imagine, this drove my parents crazy.

My parents did the best they could, which in fact was actually terrible. I used to be constantly disciplined for refusing to eat, and I was left starving more often than not. Even nowadays I hear that awful advise that ‘if you starve them enough, they will eat it’. Believe me, we won’t. Here’s the thing: we want to eat. We desperately want it. We just can’t.

I also have asthma and use a daily inhaler. Can you imagine if someone told me I just don’t focus enough on my breathing, so having asthma is my fault? That’s what happens with ARFID every single day.

I used to be a well-behaved kid, who got really good grades and stayed out of trouble. However, when I think of my childhood, these are my memories:

• My mum cooking a meal I didn’t eat, and then humiliating me in front of all my classmates, telling them I hadn’t eaten anything that day.
• My father rubbing his stake all over my food, knowing that I wouldn’t eat it after that. I was starving and lost all my food.
• My classmates calling me an anorexic.
• My father threatening me with his belt because I refused to eat.
• Being made fun of whenever there was a family event and I couldn’t eat the main course.
• Not being allowed to go on trips with my friends, because my parents were embarrassed they would find out about my eating, and they taught me to constantly feel embarrassed about myself.

In summary, I remember leaving in a constant state of hunger, fear, and isolation. If I had to sum up ARFID in just one concept it would be that: isolation. Food is such a big part of how humans connect to each other, and I kept missing on that. I felt terribly isolated, embarrassed about myself, and worst of all, impotent.

To the world, I was just a picky eater, who could change just by the sheer power of wanting to change. And yet, I couldn’t. Even though it was the thing I’ve wanted the most for my entire life.

I still want that, but I’ve kind of learnt how to cope with it.

I’ve learned to cope with ARFID as I grew older, even though I still struggle sometimes. Here are a few of the things that helped me.

Changing the Scene Around Food

As I grew older, I started having curiosity about making friends, and I somewhat lost the fear that they would find out I was different. I had some safe foods (French fries, ice cream…) that I could eat around them, so I did make meaningful connections.

Those connections outside of my immediate family allowed me to create a different relationship with food, one in which I was not constantly judged, criticized, and therefore, stressed. Around my friends I could try new things and leave them in the plate if I didn’t like them. Also, they would never pressure me to eat something I didn’t want. They got me to try pizza, burgers, Japanese food, even vegetarian… (though I still have trouble with that).

Therapy

I’ve been in therapy for almost two years, and it’s really helping me understand myself better, and work on the underline issues of my phobia. One of the causes of ARFID is early childhood trauma, which probably had a lot to do in my case. Slowly but steady, I’m working on healing every part of myself.

Acceptance

I’ve come to accept myself fully as I am. I try not to judge myself anymore for not being able to eat. It’s just who I am. Whenever I have to eat with someone new, I don’t make a fuss about it. I just say I have difficulty eating certain foods, but that they shouldn’t mind me, I’m fine. Most people leave you alone after that. And the advantage is that when someone keeps insisting, you know they are a jerk and aren’t worth your time.

When You Love Someone with ARFID

So, what can you do if you don’t suffer from ARFID, but your loved one does? Well, here are my tips.

• Be understanding. Most of us have gone our whole life being judged, and even abused because of the disorder we have. Empathy is the best gift you can give us.
• Give options. Offer us the possibility to try new foods, but don’t pressure us, and don’t make us feel bad if we get scared. We don’t want to be, but we can’t avoid it. Maybe don’t cook us something new, but rather, offer us a bite from your plate. It’s also good to expose us to different foods, especially, foods we haven’t tried before. We might discover we can eat something unexpected.
• Give us time. We might not want to try something one day, but suddenly, a month later, we are super willing to eat that food. Sometimes time does help.
• Educate yourself. Don’t assume we are just fussy eaters who want attention. We suffer very deeply. If you are a parent of a child with ARFID, please, learn about the disorder and how you can deal with it. An amazing resource is Arfid Mom.

I think the main tip I would give is to be accepting and loving. We thrive when we feel loved and safe, so please, don’t take that away from us just because we are a little different.