ARFID SUCKS - By Jill Barclay

ARFID SUCKS - By Jill Barclay

Written by Jill Barclay, Michigan, USA 

I suspect our actual ARFID journey started with me. I remember feeling anxious when certain foods were presented to me, and not because of their taste or smell, but the fear that I would bite into something that I wasn’t expecting. My oldest daughter didn’t eat meat or vegetables for the first twenty years of her life, refusing them even in the form of baby food. I was told to explore Selective Eating Disorder (SED) and the prognosis was “she’ll grow out of it”....and she did.

way things were presented. For example, he would eat a peanut butter and jelly sandwich, but only on a specific brand (Holsum) of white bread, with Jif peanut butter and Welch’s grape jam. The crust needed to be cut off and the sandwich had to be cut in triangles. As he got older he just became more particular, and as I returned to researching, I found that SED (Selective Eating Disorder) had been renamed to ARFID, and the definition of this disorder described my boy to a tee.

The biggest struggles that I can see Bryan facing are social. Yes, I would prefer if he ate healthy food, but I know now that some ARFID sufferers don’t eat much of anything, and for whatever reason, the foods Bryan has chosen to eat have kept him alive, growing and able to participate in sports and other activities. He has never been hospitalised or in need of much medical intervention to keep him functional. But, mentally it has taken its toll. As a child, when he would go to a friend's house, I would pack him a bag of safe foods and explain to the mother of the friend that he would not eat anything other than what he brought with him. Inevitably, the well-meaning mother would still pour over her selection of food, trying to find something he wanted to eat. This left Bryan feeling rude and anxious for rejecting someone trying to be kind. So much of life is lived around food. I don’t think most people even realise how much food is the topic or the centre of most social situations. 

Bryan has seen different therapists throughout his life. So many different types of therapy were suggested. He has seen a speech therapist, an eating disorder specialist, who dismissed him after six weeks, and for the past two years Bryan has been seeing a hypnotherapist. His first session seemed almost magical in how he behaved afterward, but for whatever reason, he did not return to that type of session, and now participates only in talk therapy. He recently was diagnosed with ADHD (this was a diagnosis he pursued because he noticed the signs in himself). His therapist treats his disorder as OCD, which makes far more sense than focusing on the food, as that is what produces much of his anxiety. He takes medication for general anxiety, and uses medical marijuana (which is legal in Michigan) to decrease anxiety and increase his appetite. He makes progress and has set-backs but he keeps showing up. I am incredibly proud of him because I know he is battling something that few see. 

I do believe that one of the hardest parts of ARFID is that, as parents, we MUST focus on the food. Our child has to eat to live. And the anxiety is what is really driving this disease. The anxiety surrounding food is what makes it so hard for an ARFID sufferer to eat, and when loved ones (understandably) fret about the food intake, the anxiety ramps up, and the symptoms become worse. We had some very difficult years of even his closest family members thinking he was 'stubborn' and would 'eat if he got hungry enough' (he would not). 

I could go on forever, I love my son so much . He is a beautiful, kind, generous, thoughtful, intelligent, funny, and caring young man. He has so much to offer and he deserves to be accepted for who he is, not for what he will or will not eat. I have seen appreciable change in the awareness of ARFID in my 30 + years of dealing with it, but we have a long way to go. I want to be part of the process of understanding.


**Please take the time to read the following story we will be posting in a few days time. It is an article that Jill's son Bryan wrote; it is his own personal experience, written in his own words of what it is like living with ARFID**

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