What Life Is Like With an Eating Disorder Nobody Seems to Know

I was recently asked by my dietician to share my experience with ARFID — avoidant-restrictive food intake disorder, poetically. This was a great honor for me because I am so passionate about spreading awareness, especially when it’s about a disorder that isn’t well-known and too often gets missed; missed by doctors, missed by dietitians, missed by the mental health community and missed by the eating disorder community. The lack of education on this disorder causes so many people to feel hopeless about recovery because no one understands what they are struggling with. Their disorder goes undiagnosed for years and years, or they get misdiagnosed over and over again.

What is ARFID? The DSM-5 has rigid definitions that put us into boxes. For example, it says people with ARFID cannot have disturbances concerning weight, shape or size. That is simply not accurate because here am I, struggling with ARFID and anorexia, struggling with body image issues. Also, negative body image is unfortunately ingrained into our society.

Here are common symptoms of ARFID:

1. Lack of interest in food.

2. Concerns of nausea or other physical consequences of eating.

3. Avoidance of food based on sensory characteristics — smell, texture, sound, etc.

4. Limited food variety.

5. Significant weight loss.

6. Nutritional deficiencies.

7. Dependence on nutritional supplements.

I was undiagnosed for over a decade. For over five years, I was misdiagnosed, unseen and unheard. Finally, I received the correct diagnosis at a treatment facility, only to have them change their minds a few days later because I have a distorted body image.

In 2018, I admitted to Alsana in St. Louis, Missouri. Here, I was finally seen and heard. After years of hopelessness, being terrified and depressed, there was finally a glimmer of hope. They took my disorder seriously and gave me the help I so desperately needed. They are still, to this day, providing me with quality treatment that’s suited for me and my individual needs. Although they challenge me quite regularly, I know it’s because they believe in me. I no longer feel like I’m locked inside myself, screaming without a voice. They heard me when no one else could. I am forever grateful for Alsana for being by my side while I brought myself back to life.

Although my personal experience with ARFID is, of course, unique, I hope this poem will give some insight as to what life is like dealing with ARFID.

Avoidant-Restrictive Food Intake Disorder (ARFID)

I wake up, knowing I have to eat at least four times a day, then I go back to sleep because it’s too threatening and exhausting.

ARFID.
Aggravating, Repetitive, Fiendish, Insidious and Debilitating.

Eventually, I get out of bed. It’s around 1 p.m. I go to the kitchen and attempt to find something to eat. I look through cabinets and the refrigerator. That turns into panicking. I start hyperventilating and crying, slamming cabinets and pacing back and forth. I wish for something I can tolerate to just magically appear but it never does.

ARFID.
Anxiety, Regression, Failure, Intolerability and Devastation.

Thoughts keep racing and I feel taunted by my own brain. “I’d much rather starve than deal with food,” “I’m terrified of throwing up and I’m already nauseous,” “Why can’t they just give me a feeding tube so I can never eat food again?” “I’m so high maintenance, I don’t deserve to live.”

ARFID.
Annoying, Ridiculous, Foolish, Insignificant and Dependent.

When I do eat, my mind and body are chaos. My senses are overwhelmed, I can’t concentrate, I am in crisis mode and the last thing I want to do is eat. Anything to avoid that sensation of chewing, the feeling of swallowing and the discomfort of being present. I want to shut off my ability to taste, smell and feel.

ARFID.
Avoidance, Rebellion, Fear, Intensity and Dread.

That cringy “nails on a chalkboard” feeling is magnified, and I can’t block out the sensory overload. I rock back and forth or shake my leg in an attempt to find safety being in my body. Sometimes it helps, sometimes it doesn’t. After eating, I have urges to purge what I ate because I feel so nauseous. Sometimes, I have urges to self-harm. Oftentimes, I avoid by sleeping or numbing out.

ARFID.
Afraid, Repulsed, Fragile, Inhibited and Desolate.

This was my life before getting help. I felt hopeless and terrified. I knew there was no way I’d make it if I didn’t reach out for support. Alsana has been an eye-opening and life-changing experience for me. Doing exposure therapy around my fear foods, developing food and sensory hierarchies and exploring the functions of my behaviors are just a few examples of how I’m fighting to get my life back.

I’ve eaten things I’d never thought I could even be near. I’ve trusted my treatment team with my meal plan, something I didn’t think was possible. I’ve used learned skills when I thought I was a hopeless case. It was definitely not easy, and yet I am here.

ARFID.
Ambitious, Resilient, Flourishing, Insightful, Determined.

A version of this article was previously published on Alsana.com.