Not Always As It Appears: Living with ARFID

I was first diagnosed with anorexia nervosa when I was 12 years old. It was 1996, and I had never heard of the term in my life, as eating disorders were not discussed anywhere near as often as they are now, and it was before the explosion of the internet, social media, etc. When the doctor told me I had anorexia, I had to ask what it was – I thought it was cancer or something! Even though I was very young and my disease was unintentional in that I wasn’t consciously trying to lose weight, it was the truth: I was struggling internally and didn’t know how to deal with that; therefore, I showed my pain externally. 

This began a very long journey that I’m still on, but the disorder has evolved over the years as I’ve grown and matured. I now have zero desire to lose weight and I am not particularly preoccupied with what I look like. At age 32, I’m more concerned with becoming healthy because I want to be able to have children and live the best life that I can. However, even though I no longer consider myself anorexic in the traditional sense (wanting to lose weight, having poor body image, etc.), I am physiologically “stuck.” Two years ago, I lost weight unintentionally to a very dangerous extent. 

I made a deal with my doctor and therapist that if I could not get some weight back on in a certain amount of time, I would agree to be hospitalized. I tried hard, but despite my efforts, I lost even more weight in a battle with whatever was going on with my body and metabolism, and so I fulfilled my promise and was hospitalized for medical stabilization for two weeks at the Acute Center for Eating Disorders at Denver Health. This is the top medical stabilization hospital for the most severe eating disorders in the United States, so I knew something serious was going on. 

While at Acute, I first learned of the term ARFID, which stands for Avoidant/Restrictive Food Intake Disorder. After speaking with a psychiatrist there, this term seemed to fit my experience much better than other eating disorders insofar as they are traditionally understood; in so many words, ARFID basically means that there is no intent to lose weight or struggle with body image, but that other factors (which can differ for each person) cause sufferers to have difficulty eating and, in turn, gaining weight. 

After a lot of testing, I learned that my inability to gain weight is a result of several factors, the most prevalent being gastroparesis (very slow emptying of food from the stomach to the intestines in order to digest). Gastroparesis is incredibly painful, and because of this I have to be on a mostly liquid diet unless I want to spend hours curled up in extreme pain. What is incredibly frustrating, and what I hope readers will try to understand, is that very often people just see a very underweight person and make assumptions. I’ve even had people walk out of my life or distance themselves from me because they believe that I’m intentionally starving myself to death and they can’t handle witnessing it. What I so wish they would do is simply reach out to me in kindness and ask, so that I can explain the reality of ARFID, which seems to be a relatively newer term in the world of eating disorders, the pain of gastroparesis (which no one can truly understand the extent of without having experienced it), and that I am working hard with my outpatient team to find the best treatments for these so that I can heal. 

I understand how hard it can be to ask someone about this, as it may feel intrusive or there may be fear of causing a negative reaction, but please understand that it is so much more hurtful to a sufferer if loved ones just make assumptions and back away. It causes even more loneliness than we already feel and causes me to isolate myself, which makes my anxiety worse and makes it harder to press on in seeking treatment. Opening the conversation gives us the option to explain what we’re going through, and how you can be supportive. If this happened more, I truly believe sufferers would be more motivated to seek full recovery knowing they have a support system believing in them.

If you love someone who struggles with any kind of eating disorder, please understand that it’s not always as it appears. Reach out, ask, support, encourage – we need you! And to all those struggling, please remember that you are not your illness.

Julie McDiarmid lives near the Southwest beaches of Lake Michigan with her husband and dog. She is an English teacher, and enjoys being active, writing, volunteering with her church, and being an advocate for sufferers of mental illness. Her personal blog can be viewed here.