What I've Learned Living With Avoidant Restrictive Food Intake Disorder

Since being diagnosed with avoidant restrictive food intake disorder (ARFID) in 2017 when I was a late teenager, I have learned and experienced the highs and lows of battling this strange eating disorder. I still don’t really understand it myself and I don’t expect anyone else to that doesn’t struggle with mental illness either. I still hardly know anyone my age or older with this eating disorder, I almost always hear of toddlers, young kids or teenagers with this eating disorder, so I haven’t really had someone to guide me through this who has had a similar experience. So here’s mine.

In 2017 The Mighty published my story on ten things I wanted people to understand about ARFID, but I’ve experienced different things about living with an eating disorder as I live my life as a young adult, and experience adulating things, such as going to university, going flatting and getting my first job in my chosen career. To say it’s been difficult would be an understatement and I wonder how people younger than me, who also have ARFID, might be able to learn from my experiences and apply it to their life as they develop into a young adult.

1. Studying after high school

Although I only had class for four hours a day, I often got there an hourly early to eat my lunch, because I had such a severe (and still do) fear of choking on food. So I needed time to be able to eat food without the pressure of time or other people. I found a safe environment in the student lounge where I was alone in a quiet space, and it became my routine. I was also on a routine of eating six meals throughout the day (breakfast, morning tea, lunch, afternoon tea, dinner and dessert) and living an hour away from where studied meant I had to pack all my meals with me. I got a few comments from tutors asking why I was always an hour early every day, but all they needed to know was that it was because public transport didn’t align with the time I needed to arrive for class. And that was OK.

2. Traveling for University

Since I was studying travel and tourism, we often went on trips and camps to experience touristy things and tourism. This was all in the same year that I was at the lowest point in my eating disorder, as well as treatment, recovery and mainly focusing my life around getting better. So being away from home for a week at a time was not the greatest idea, but I managed to have a great time regardless of not being in control of my eating disorder. Ironically there were no meals prepared for us students, so I packed all my food, and my parents spent a few months leading up to the trip teaching me how to cook meals that I liked and were healthy for me. One was chicken curry, which is now one of my favorite meals that I cook often, but it was also a new safe food for me at the time of studying, so I was obsessed with it. So while the other students were spending money on fast food and takeaways, I was cooking myself some healthy food; it was a safe food;I saved quite a bit of money on food; and most students were a bit disappointed they hadn’t thought of bringing food with them. I also packed so many snacks with me, which made the long bus rides even more enjoyable.

3. Traveling for pleasure

The only country I’ve traveled to and actually explored it for a week was Australia (I live in New Zealand), and the only other way I’ve traveled is on cruises, where they have hundreds of different types of food on board, so we never worried about what I would eat on board. And even if there wasn’t a safe food on board, the staff are very accommodating at no extra cost.

So as for traveling abroad, I haven’t actually experienced that yet, since Australia and New Zealand have very similar foods. Even traveling within New Zealand, I still sometimes worry about what I’m going to eat, but I think that’s from the habit of worrying what I will be able to eat with such a small portion of safe foods. As now I have a large variety of safe foods, I no longer need to worry as much. Traveling overseas is still on my bucket list, but isn’t possible right now with COVID-19 restrictions.

4. Work

I still laugh about every time I think of this as I was just in complete shock! I used to live an hour away from Auckland City, so I would get to work at 7.30 am as that’s just how the public transport timing worked out, which I didn’t mind because it gave me 30 minutes to have breakfast before I started work at 8 am. Anyways, at the time of this job, I was on weight gain, and my dietician told me that if I have spreads on toast, butter/margarine is high in calories, and to spread quite a bit on the bread/toast to help increase my weight.

So as I was doing that, a colleague not much older than me walked in to the kitchen as said “wow, that’s heaps of margarine.” And I didn’t know what to say! I couldn’t believe someone had just commented on my food!? So there was just awkward silence for what seemed about one minuted until I said “sorry.. did you just.. say that I’m spreading too much margarine on my toast?” And this colleague said “Well.. I mean, yeah, it’s not a lot, but it’s more than what I would have.” So I said “Yeah.. um.. I’m on a diet” and left it at that.

Another story was that I got McDonald’s for lunch one time, and a different colleague who was rather on the obese side of weight, said “how can you eat such unhealthy food and never gain weight? You’re so skinny!” and I think I just said how I have my father’s gene’s and that I have fast metabolism.

But what my point of these stories is that, for starters, society seems to think it’s OK to comment on skinny people’s appearance, but it’s not OK to comment on bigger people’s appearance, when it should not be OK to comment on anyone’s appearance, right? Lots of people know me as the girl who snacks a lot, and I do, but it’s because for two years, I had to eat six meals a day, on top of all the protein shakes I was drinking to get myself at a healthy weight. I don’t mind it so much since many people don’t know my story and that I have an eating disorder, but many people don’t realize what they’re saying. And I suppose my advice to those who experience awkward comments is to just laugh it off. What they say doesn’t have to affect you, and what you struggle with doesn’t need to be any of their business either.

But if your colleagues and managers know, and they are supportive, then work can be an amazing safe environment. Before COVID-19 (I was made redundant so she’s no longer my manager, sadly), my manager was 110 percent supportive of my mental illness, and I think that’s one of the reasons why I love the company I work for (I got my job back a year later, and now have a different manager). They’re so supportive and it’s like a family environment.

5. Flatting

The first night I had moved in to my flat, I didn’t know what to do. I had never been flatting before and growing up I hardly ever went to sleepovers because of my avoidant restrictive food intake disorder, so I literally had no idea what to expect or do. So I heated a pie, and I chilled in the kitchen with my new flat mates. I found it really awkward because I was so anxious, I didn’t feel like eating much, and when I’m feeling anxious, my fear of choking on food becomes more intense, so I eat much slower. The next night, one of my flat mates commented on how long it took me to eat my pie, and I was straight up open and honest with her about ARFID and she’s been cool about it ever since. I haven’t yet brought it up with my other flat mates since they haven’t noticed or commented on what I eat and how I’m a slow eater, and that’s OK.

I think once you leave high school, and you’re a young adult, people start looking after themselves in terms of eating, and as long as what you eat doesn’t affect others, then why should they be commenting on what you eat? And if it really is that much of an issue, you can always move out in to a different flat.

6. Life in general

I’ve been reading a few self-help books lately (shout out to Sarah Knight for teaching me how to “not give a f*ck”) and I’ve realized that when people comment about how ARFID doesn’t exist, and that we’re just picky, fussy and spoiled, it’s coming from their own problems, where maybe they weren’t allowed to explore food on their own terms, and that may have caused some trauma for them. People are absolutely allowed to share and express their opinions, but when it’s on your mental illness, and you did not ask for their opinion, then tell them to shove it and carry on with your life, because a stranger’s opinion on your mental health should not make an impact on you (if it’s a stranger of course, but if it’s someone you know then do proceed with caution with what you say next).

Ironically I still struggle with that advice myself, but I’ve learned to only open up to people about ARFID and anxiety if I feel safe around them, and feel that they will be supportive. And sometimes in person, I don’t even respond to someone commenting on the food I eat, or I just say “yeah” and literally laugh a little and carry on with whatever I was doing.

Avoidant restrictive food intake disorder is so weird. You literally fear food, like, how bizarre is that? I remember food I used to fear, which I now love, and I don’t understand how my past-self used to be scared of this food that I now love. And that’s not invalidating my thoughts, emotions and experience, that’s just me being proud of myself with how far I’ve come in four years of becoming in control of ARFID, but also still not understanding this eating disorder and why it exists in my life. If you’re reading this, then it must be because you know someone with ARFID or maybe it’s yourself, but I hope you learn to gain control of your mental illness to be able to lead the life you want to live.