In light of Sad Perfect causing waves throughout book
twitter, I felt like writing something about my own experience with ARFID was
in order. This is long, not really edited, and mostly stream of conscious.
Sorry.
I’ve
had ARFID (Avoidant/Restrictive Food Intake Disorder) my whole life. I never
really grew out of the “picky eating” stage, much to the concern and
frustration of my family. Doctors didn’t know what was wrong, it wasn’t a
recognized disorder when I was a child, they just assured my parents I would
grow out of it.
I
never did. At the teetering point between 21 and 22, I’ve been officially
diagnosed with ARFID for around three years.
My
whole life has been marked with an extreme phobia of foods. I didn’t eat much,
and often times my parents would leave me at the dinner table to finish what
was on my plate. I’d go to bed hungry, since that was preferable to having to
eat something my brain deemed “unsafe.” Why were these foods unsafe? There was
a variety of reasons- I didn’t like the texture, the smell made me nauseated,
and usually just flat out because the thought of eating it caused me such bone
deep anxiety that I could hardly move.
I
have a set list of safe foods (which I will not be disclosing because it’s
personal and a little embarrassing), and most things on it are either fruits,
carbs, dairy, or junk food. Meats and vegetables are almost a complete no for
me. I often watch videos of people trying foreign food and just find myself
wondering: how do they do that? How do these people look at a food they’ve
never seen before in their life and just pop it in their mouth like it’s no big
deal? I have to tread carefully even within my safe foods, because even slight ingredients
or brand alterations can cause me to lose something to the “unsafe” category.
My
social and familial life has been structured around this disorder. I can’t go
to restaurants that don’t have any of my safe foods (I have, on more than a few
occasions, gone without eating during holiday dinners), I can’t eat split
topping pizzas, God forbid a safe food even touch an unsafe food. It made me
feel like a burden, like I was ruining everyone’s good time with something I can’t
help. “Why don’t you just pick the
toppings off?” someone would say, and I would just shrug because “it’s been
tainted” sounds ridiculous. “Don’t you get tired of eating at the same place
all the time?” someone asks, and I just want to scream that yes, yes I do but
there’s nothing I can do about it.
I
always told myself that I would grow out of it, that I just needed to try
harder. But as years passed and health classes stacked up (not to mention the school
visits from a well-known nutritionist whose children were in my school system),
my anxiety about it grew. It came to a head my senior year of high school, when
I realized my food options would be different once I started attending
university. I knew that there would be safe foods on campus – what campus doesn’t
have pizza or French fries? – but surviving off that would be a hassle.
So my
freshman year, in the middle of class (I’m not going to pretend like I’m a
fantastic student) I researched. I looked up my symptoms, I looked for people
like me. When I found results, even a name for it, I nearly started crying.
Putting a name to something that’s affected me my entire life was one of the
most liberating experiences I’ve ever had. I was able to bring it up with a
doctor for diagnosis, I was able to join a community of people like me.
But I’m
still cut off from such a massive part of something society considers “normal.”
There’s very little I can do in terms of treatment (it exists, but I find that
the disorder is still too new for anything concrete to help), and the best I
can do is grin and bear it. It’s hard for me to say “I have an eating disorder”
to people, because the statement often causes high alarm and I end up feeling
like a liar when I explain that it’s really just that my diet is restricted.
Due
to ARFID being a low risk ED (in addition to it usually being part of Autism),
I am not entirely surprised that it doesn’t have much mainstream attention. It
is, however, incredibly upsetting that the attention it does get often treat it
as a spectacle. The episode of “My Strange Affliction” comes to mind, which
showcased a woman who could only eat fries prepared in a very specific way. The
hosts convinced her to try some rice, and the entire tone was disbelief that a
grown woman was crying over a plate of rice that she hadn’t even eaten yet.
That’s how ARFID is: I’ve been in the same spot as that woman (albeit in my
home at dinner, not on TV) and knowing how “strange” people find it makes me
want to eat in public even less.
At
the end of the day I mostly just want my disorder to be taken seriously, and to
be allowed a voice in discussions about eating disorders. I’m always willing to
answer any questions about it, and if anything here isn’t exactly clear (I’m
aware it’s rather rambly and some things are hard to put into words), I’m
perfectly willing to clarify.
