Living with ARFID*: A Lifetime of Navigating Food and Fear 

About the Author

I’m Monk Black, 58, adult-child, Autistic and disabled. I navigate CPTSD recovery with art, writing, philosophy, and humor. Turning personal tragedies into meaningful ways to heal myself and help others.

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A Complicated Relationship with Food from the Start 

Food has never been easy for me. I don’t know if I was born with ARFID or if it developed from gastrointestinal problems I had from birth, but the earliest stories told about me involve struggling to eat and plugging up all the toilets across several continents. My step-father was a diplomat, and we lived in several countries with all sorts of exotic foods that most people would love to feast on. Not me! 

From the day I entered the world, feeding was a nightmare. I refused my mother’s breastmilk, formula, and even water. The situation became so serious, I was hospitalized and fed intravenously. I hear for most babies, eating is instinctive. For me, it felt like a form of torture I fought to avoid. My mother even had her breast milk tested; it was fine. The doctors at the hospital couldn’t understand why I wasn’t eating. 

More Than “Picky Eating” 

As I grew, people labeled me as a “picky eater.” I have always been hypersensitive to textures, smells, and temperatures. If it’s served hot, it better stay hot or I couldn’t eat it. If it squeaked in my mouth like mushrooms do for me, forget it! Certain foods trigger an immediate gag reflex. Mealtime was an anxious event, especially since my mother was a foodie. 

I’ve never liked eating meat, yet as a child, I was forced to choke it down. One of my most vivid memories is being made to eat cow tongue. The smell, the texture, the little bumps, and worst of all, the knowledge of what it was left me deeply scarred. That single experience has stayed with me my whole life. 

Rules, Rituals, and Avoidance 

I have strict boundaries around food. I can’t eat something that you have to bite pieces off and put back on a plate like corn on the cob, ribs, or apples. I have to cut the core out of an apple before I eat it, at least that’s what I used to do before I developed a sensitivity to all fruits except for one brand of apple baby food. And don’t even try to eat these foods in front of me! I can’t watch. I finally gave up, and now I eat alone to avoid these situations entirely. 

Because my “safe” foods are so limited, I often eat the same thing repeatedly until I develop a sensitivity to it and can’t eat it anymore. Right now, my diet consists almost entirely of protein shakes, baby apple food, thin KIND bars, buttermilk, and one brand of rice cakes. Actually, all my foods are limited to a specific brand. If they go out of business or are discontinued, I can’t eat that food anymore. 

The Physical Cost of Limited Eating 

Living on such a restricted diet has left me nutrient-deficient. I take copious amounts of vitamins and minerals to compensate, but even so, my sodium levels remain low as well as my blood pressure. 

At 58 years old, the long-term effects have been a punch in the gut, pun intended. I just found out I have osteoporosis. My grandmother didn’t have osteoporosis. My mother doesn’t have osteoporosis. If you saw me, you wouldn’t think I have osteoporosis! I’ve consulted nearly every gastroenterologist in my area, but no one has been able to help me expand my diet or resolve my physical issues. 

More Than a Physical Struggle 

The mental and emotional effects of ARFID are just as significant as the physical ones. Eating isn’t just about nutrition, it’s also social, emotional, and, living in so many countries, cultural. Mealtime is supposed to be a time to connect with others and even be a pleasure. For me, it has been mainly a source of anxiety, fear, and crippling pain.  

I’ve avoided social gatherings simply because of the food involved. I’ve lost jobs because I had to sit at big conferences with clients with an empty plate in front of me, not being able to articulate why I wasn’t eating. 

Understanding ARFID 

Avoidant Restrictive Food Intake Disorder is more than “being a picky eater.” It’s an eating disorder that can lead to malnutrition, interfere with daily life, and seriously impact mental health. Unlike other eating disorders, ARFID isn’t driven by concerns about weight or body image. Instead, it’s rooted in sensory sensitivities, fears, or past negative experiences with food. For me, it’s a mix of all three, combined with lifelong gastrointestinal challenges.

Seeking Help and Finding Hope 

My journey has been long and is not over. I see a therapist twice a week and a physical therapist once a week. In therapy, I’m addressing anxiety and complex PTSD using EMDR (Eye Movement  Desensitization and Reprocessing). I’m hoping as I heal the trauma and overcome the fear I’ll be able to add back some of the foods I’ve lost and introduce some more like the buttermilk to help with my bones.  

I also meditate daily, exercise regularly (hence the “you wouldn’t think I have osteoporosis”), and use red light therapy to support my overall health. I’m a big fan of support groups and most importantly, a sense of humor.  

Why I’m Sharing My Story 

I’ve been to so many gastroenterologists who kept telling me, “It’s all in your head, go see a therapist.” I was seeing a therapist, but it wasn’t until I joined AANE and started linking my food struggles to my autism sensitivities that it even occurred to me that I could have ARFID. It’s easy for people to say, “Just try it,” without understanding that for someone with ARFID, that “just” can feel impossible. 

I’m sharing my story because I want people to know about ARFID. I’ve learned it’s not a choice; it’s a complex condition that affects the body, mind, and spirit. 

If my story helps even one person feel less alone, or encourages someone to seek help, then speaking up is worth it. And if it helps friends, families, or professionals approach someone with ARFID with more compassion, then I’ve achieved something important. 

I may never have the easy, joyful relationship with food that others do, but I refuse to give up. I’m committed to living a meaningful life, especially if I can help others.