This week is National Eating Disorder Awareness Week. Anorexia, Bulimia, Binge eating, purging, Eating Disorder Not Otherwise Specified… the list goes on. I have Avoidant/ Restrictive Food Intake Disorder (ARFID), which unfortunately goes unnoticed most of the time. When you look at what are supposed to be “comprehensive” lists of all types of eating disorders, ARFID is not always listed, despite it being a real disorder that’s in the DSM-V. I used to think that it was because my eating disorder was unimportant or that it wasn’t real. I have family and friends who validate my eating disorder (ED), as well as my treatment team and 2 dieticians, but I still have doubts that my struggles with food count.
I’ve struggled with ARFID for a solid number of years now. Growing up, food always had a lot of strict and complicated rules on it. Every house I went to had different rules that needed to be followed. When I broke the rules, I’d get punished, or I’d be so ashamed and be hard on myself. I hated snacking and eating meals. I was always so scared, so I started avoiding eating as much as I could, and when I did have to eat, I’d limit how much I ate. I began a list of foods and their rules in my head, trying to keep up. “if you eat cereal you must have 2 bowls” “you can only have two snacks open at a time” “if you go back for second for dinner you have to get seconds of everything” “my kids can have seconds and eat leftovers, but you can’t” etc. in my late high school years and especially after graduation, I became very thin. People kept telling me I needed to eat cake, or that if anyone gave me a hug they’d snap me like a twig. I loved how skinny I was. I had no idea how sick it would make me.
During one of my dozens of stays on the psych ward, the nurses noticed just how little I was actually eating. When they asked me to start eating more I got scared and refused to eat all together. They also noticed how underweight I was one day when they were updating my info in my chart. The staff had a dietician come talk to me. When it became apparent I had an eating disorder, they called into question the need for a feeding tube until I got the help I needed to start eating right again. Thankfully we didn’t go that route, and instead, she prescribed me a special nutrient-heavy drink.
A few months later I attended Rogers Memorials’ FOCUS program as a resident for two months. Once a week I worked with a dietician, and I was required to eat all three meals a day, and two snacks a day. I was under a watchful eye of staff to make sure that I was compliant. I also had to attend a nutritional class once a week. While I didn’t like any of it, I knew it was important. Sure enough, I started gaining weight again. From the start of my ED recovery until today, I’ve gained about 80 lbs. and am now at a healthy weight. But my fight is still long from over.
I still struggle with body image on a daily basis. Taking a photo when my stomach is bare is incredibly difficult for me. I usually take at least ten before finding one I’m somewhat okay with having “out there”, even if it’s just a text to a friend. I still have serious food issues. I had a panic attack in the grocery store when my friend asked me what kind of frozen pizza I wanted for dinner recently. I average about one meal a day if I’m being totally honest. I still have to drink Ensures to make sure I stay nourished. But I struggle to talk about and show my eating disorder.
It doesn’t always feel real for me. Sometimes I struggle to believe my eating disorder is valid and not an excuse. But with each frozen burrito, I feel like I’ve accomplished something, and that helps me know that my eating disorder is real and that it is something I struggle with. Just because it’s lesser known or sometimes overlooked by websites doesn’t mean it’s not something I deal with every day. My eating disorder is real, and I’m proud to share my story to help spread awareness this week and every week.
Spread awareness this week using #NEDAwareness
For More on Eating Disorders: nationaleatingdisorders.org
National Eating Disorders Association Helpline at 1-800-931-2237