The Eating Disorder No One Talks About

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I was recently asked by my dietician to share my experience with ARFID, Avoidant-Restrictive Food Intake Disorder. 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 dieticians, 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 (Diagnostic and Statistical Manual of Mental Disorders 5th edition) 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:

  • Lack of interest in food
  • Concerns of nausea or other physical consequences of eating
  • Avoidance of food based on sensory characteristics (smell, texture, sound, etc.)
  • Limited food variety
  • Significant weight loss
  • Nutritional deficiencies
  • Dependence on nutritional supplements

Throughout my life, I had gone undiagnosed for over a decade. For over 5 years I had been 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 of 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 bring myself back to life.