My Eating Disorder Controlled My Life For 23 Years

CAUTION TRIGGER WARNING

For 23 years I wasn’t in control of my life. The worst part was, like many people, I didn’t know that I wasn’t in control. My eating disorder, also known as ED, dictated everything. How much I could eat, what I could eat, what wasn’t “safe” and so many other things. I missed dinners, birthday parties, school trips, vacations and so many opportunities because of my eating disorder. The worst part about the whole thing was that no one, not even the long list of doctors I had gone to as a kid, could put a name on my eating disorder or even identify that it existed. My poor mother lived in agony along with me blaming herself as I did me.

Avoidant Restrictive Food Intake Disorder. Also known as ARFID. We were the best of friends my entire life. ED kept me safe, or so I thought. The most abusive relationship in my entire life was going on inside of my head. For those of you who don’t know about this eating disorder, it doesn’t always find its roots by controlling your calorie count, your dress size, or even making you purge your food. ARFID is one of the newly recognized eating disorders in the DSM as of 2013. This means that growing up, I was labeled the “picky eater” and I was shamed and blamed for my decisions at the dinner table because everyone assumed they were in my control. I hated myself. With a roaring passion. I blamed myself for gagging and throwing up when I smelled something I wasn’t comfortable with or touched something that my eating disorder labeled repulsive. It was a fight I was having with myself every day with no ground ever gained. Like climbing a muddy hill in the rain, I felt hopeless and like I would never see the other side.

Throughout my childhood I did manage to add a few items to my menu of approved “safe foods” but it was the absolute most difficult and daunting task. My safe foods to start out were fries, chips, pizza with no cheese, and fruit. I remember how proud I was when I was in 1st grade and my teacher and I would eat a spoonful of peanut butter every morning before the rest of the kids would come in. Mrs.Black was the first teacher I had that knew something was off with my eating and wanted to help. It’s people like her that made me feel somewhat normal and loved even though I was different. My teacher in 5th grade had a garden that we would grow together as a class. She helped me find the courage to try a salad. We grew it together in our garden. I had played an integral part in my nourishment from start to finish. Ms.Lopez will always have a special place in my heart and in my early recovery because she believed in me before I did. I was 13 when I decided I wanted to like cheese on my pizza. I was so determined to at least eat 1 kind of food like a normal human. It took a long time but I did it.

But that’s pretty much where the progress ended. I continued through my school years until college, completely unknowing of what had deep roots controlling me. My best friend, Kristina, one day showed me an article about SED (Selective Eating Disorder) which is called ARFID today. I will never forget how excited she was to show me that there were other people in the world who felt what I felt. And I will never forget the tears that welled up in my eyes as I realized for the first time that I was not crazy. From then on, her and my mother helped me find resources talking about the new type of eating disorder. I called so many therapists in the area that had the words “specializes in eating disorder treatment” under their name. One by one I called, spoke to an assistant or a therapist, and learned that they didn’t treat my kind of eating disorder. Some of them didn’t even know what ARFID was. I was so discouraged and heartbroken I felt alone again. All of the feelings of hope were almost completely washed away when I called the woman who is my therapist now. She had the most cheerful voice. Like a little bird. I shakily asked about her experience with eating disorder patents and about ARFID. When she chimed, “Oh I actually specialize in ARFID,” I couldn’t help but sob my entire heart out because I finally found someone who could help me. The person I had grown to hate for my entire life.

Sitting in her office for the first time talking about my eating disorder had to be one of the hardest things I had ever done in my life. I remember very clearly that session. I wrote a list of foods that I didn’t eat and explained my eating habits to her. Just those simple tasks sent me into a massive panic attack. My stomach lurched, my head spun, and my ribs felt like they had shrunk, choking me from the inside by suffocating my lungs. I lost feeling in my legs and arms and the whole room felt like a sauna. A bright sauna. It was almost like the colors were being sucked right out of the room. All because we were talking… just talking about my eating disorder.

It took me a long time to go through some basic steps in treatment. Even saying the word eating disorder made my tongue thick. But here I am, a year and a half later speaking to you. Writing this for complete strangers to read in hopes that someone out there learns that they’re not alone in this journey with ARFID or any other eating disorder that you may struggle with. It doesn’t even have to have a name. Your relationship with food, your nourishment, is so important to your health. Not just physical, but mentally and spiritually too. Today I know that ARFID doesn’t control me. It will not break me. And I will continue to fight every day for the rest of my life, no matter how long it takes. Because I, am worth it.

4 thoughts on “My Eating Disorder Controlled My Life For 23 Years

  1. Proud is an understatement! I have seen first hand that this journey has not been easy for you but I also have seen the amazing gains you have made over the last year and a half. I am so humbled that I get to share in your journey and do a little part to make you know you are not alone in this. I’ve told you before but know that you are one of the strongest and bravest people I know! Keep making me proud and sharing the beauty of your story!

    Liked by 1 person

  2. Cassie, this is an amazing story. I’m so happy that you have found out about this and have found a way to work through it and continue to use the knowledge to help others!! You have always been a shining light to us and as you know a true role model for Katie! Love you bunches and always wish the best for you in life!! Much love Robin

    Liked by 1 person

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