ARFID and Transgender People: My Personal Struggles With Eating

Am I a picky eater or is there something more to it?

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One of my dear friends recently had a health scare. She’d been there for me at the very early stages of my transition, and she was beyond amazing. She invited me to holiday dinners when my family abandoned me, did girly things like taking me to get my hair/makeup done, and she took me to my first facial feminization surgery, getting me there on time despite I-95 being shut down. (She’s a fantastic driver and got me there on time taking side roads like a boss!) I truly do not know what I would have done without her.

Recently, she’s been having difficulty breathing. Her doctor ran some tests but could not figure out what the problem was. That led her to specialist after specialist, but all they had were guesses. Eventually, it got so bad she had to have an oxygen tank to ensure she could breathe.

Do you know what she said was the most frustrating thing about being sick? When the medical field isn’t able to diagnose you quickly, correctly, or even at all. After all, how can you treat something if you don’t know what it is?

Fortunately, my friend finally found the right specialist and got diagnosed and treated. She’s back to breathing well and living a normal life.

That’s why I so respect my trans elders who grew up in the 50s, 60s, 70s, 80s and even the 90s. They blazed the trail before me, without having the words to describe what they felt and were going through.

How do you describe what it feels like to be in the wrong body without having the words? Not having the right words to describe something so personal is something that I cannot imagine.

As much as society loves its labels, I am thankful that today we have the words to describe gender incongruence. After all, if I know (and more importantly) accept that I am transgender, then can I know transitioning is a path to alleviate my gender dysphoria. I can know I don’t have to just suffer through it.

Once I realized and accepted that I was transgender, I wanted to learn some ins and outs, some tips and tricks, from my trans elders — before going on the journey myself. Mind you, this was before I started my medical or social transitions and before I came out.

I created a fake Facebook profile for anonymity, then I started liking/following various transgender and LGBTQ pages.

On one of these trans social media pages, someone posted about her difficulties with meals, how going out with friends was always an ordeal because she was such a picky eater. She used the term ARFID, and that’s when I became extremely curious.

I decided to do some digging.

First what did ARFID stand for? I googled and found, “Avoidant Restrictive Food Intake Disorder, ” defined as:

An eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs.

—* https://www.nationaleatingdisorders.org/avoidant-restrictive-food-intake-disorder-arfid/*

I wondered what some of the symptoms of ARFID are, and I found:

— Dramatic restriction in types or amount of food eaten — Will only eat certain textures of food — Lack of appetite or interest in food — Limited range of preferred foods that becomes narrower over time (i.e., picky eating that progressively worsens).

— https://www.nationaleatingdisorders.org/avoidant-restrictive-food-intake-disorder-arfid/

This was starting to hit close to home as I have always been considered a picky eater… ALWAYS. All of the above describes me to a tee, and I finally had a medical diagnosis to explain my picky eating! Do you know how relieved I felt to be able to describe what I had experienced all my life?

I cannot tell you HOW many times I was gaslit by not only my parents but by friends/relatives/to random strangers.

“Why don’t you just try it? How do you know you won’t like it? It won’t kill you!”

I was like, Leave me alone. I like what I like, so why make a big deal of it?

The trauma was just too much. I would feign lack of appetite to avoid being forced to eat something.

“No, no, I’m not even hungry,” I would often say to my mom or at school lunch hour. I would’ve said anything just get them to stop talking about eating. Can we please go back to talking about Super Soakers and playing Goldeneye on Nintendo64?

While I have never been formally diagnosed with ARFID, I do not need a doctor to tell me. Just like if you are transgender, you don’t need a medical diagnosis to know you’re trans. If you say you’re trans, that’s good enough for me. Same goes with ARFID.

I was really shocked to learn how much it disproportionately affects the transgender and LGBTQ community as a whole.

According to NationalEatingDisorders.org:

• Around 18% of trans men and women have had an eating disorder at some point in their life, compared to 1.8% of cisgender women and 0.2% of cisgender men.
• Genderqueer and gender-expansive people report higher rates (11–12%)
• Trans men (9.6%) and trans women (4%) report lower but still significant rates (Romano & Lipson, 2022)

So why are LGBTQ people more susceptible to developing an eating disorder?

Studies have been largely inconclusive but researchers have some ideas, suggesting a number of potentially intersecting causes:

This can be due to many overlapping reasons, including the distress some people feel when their body does not reflect their gender (known as gender dysphoria), experiences of discrimination, and societal pressure to look or behave a certain way.

— [https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/research/learn-eating-disorder-research/eating-disorders-in-transgender-and-non-binary-people/](https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/research/learn-eating-disorder-research/eating-disorders-in-transgender-and-non-binary-people/)

When you take the above into consideration, it makes sense that LGBTQ would more susceptible to eating disorders. When you are constantly being discriminated against and forced to conform to society’s outdated stereotypes, you are bound to compensate in for your own well-being, and that can be in the form of eating.

Do you know what I hate the most about having ARFID, though? All the unnecessary judgment I receive. Can’t people understand how difficult this is?

No one questions your taste in beer, why you don’t like IPAs or lagers. Or if you don’t like country or rap music.

You just don’t like it, and I don’t judge you for it. So why are you judging me when it comes to food? I swear I get judged for having ARFID all the time, but if you’re a vegetarian or a pescatarian no one bats an eye. Right?

Fortunately, my case of ARFID is probably not as bad as others. I have branched out here and there as I have gotten older. But it’s always a struggle, to be honest.

I’m a self-described “meat-a-tarian.” Think lots of chicken / steak / proteins combined with starches like potatoes and grains. (God, do I love bread!) I can usually find something on a menu if I go out to eat. If I can’t, I’ll eat beforehand or afterwards. The last thing I want to be is a hindrance to others who want to go out and eat ethnic foods or go to some place I’ve never heard of.

The biggest thing I want others to know is to not to cater to me or treat me special, as if something was wrong with me. I went to a party once and someone told others beforehand, “Hey just so you know…Amber is trans so just wanted to give you the heads up.” Like WTF? I don’t go to a party and be like, “Hey just so you know Courtney is left-handed so just wanted to give you a heads up.”

I do not want special treatment. I want to be treated like every other normal person there and not judged for what I can eat.

I will make due, as I have all my life with being a picky eater, and now understanding that I have ARFID. I will not starve because of where you choose to eat, so if the collective group wants to go somewhere, let’s go! I am not averse to new places or cultures. Wanna go hiking or to the beach or a museum, let’s go!

So, the next time you encounter someone who is a picky eater, could you please just leave them alone? And for god’s sake, don’t judge them or pester them with questions like, “Why don’t you just try it?!” Let them order the chicken sandwich with just lettuce, bacon, and no sauce — or tomatoes on the side because they can’t stand having everything touch together. As difficult as the world is today, can we just let people be happy and eat what they want?

All the Best!

— Amber

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