My son tells people he has “A bit of the ARFID” in an Irish accent. So, although now ARFID has some other nasty connotations for me, I prefer to get a giggle from my son’s quirky take on the word.
Sam was 16 last year when he was diagnosed. He was down to 42 kg and was really struggling with his mental and physical health. I referred him to the local Child and Adolescent Mental Health Service (CAMHS) and was both surprised and not surprised that he had an eating disorder (and then a further diagnosis of autism). I didn’t know ARFID existed, so when CAMHS told me they thought he had it, it was like a light bulb went off over my head. It made complete sense. Sam had always struggled with food, with eating out, with trying new things and the only way I could get him to eat was by distracting him (we used to laugh about it and call him Mike TV). I was worried and took him to specialists throughout his childhood but they more or less told me to calm down and that he was perfectly healthy.
Supporting someone with ARFID is a huge physical and mental load (and financial load). I am always focussed on making sure Sam’s intake of food for the day is sufficient (it’s still half of what his peers have). I need to make sure that I have plenty of what Sam considers his ‘safe’ food on hand and that I am available to serve it to him. If I’m not around, he loses weight, so it has a huge impact on what I can and cannot do, professionally and personally.
Life’s social engagements revolve around eating. Eating, and eating in public is one of Sam’s greatest fears, so we are forever refusing invitations to catch up with family and friends, or leaving Sam behind and hoping that he eats the food that has been left for him. There is no such thing as a family meal. This is something that causes so much distress, so we tend to eat individually, or without Sam. A lot of people do not understand how significant this is for Sam and the rest of us at home. It has a huge impact on our daily lives and the relationships we have with each other and with broader circles of friends and family. People think it is something that Sam has control over and that he should just ‘get over it’. That’s really frustrating. Because we have to go with what Sam eats, we spend a lot of time in McDonalds drive throughs or waiting in the car while he orders Subway. It’s a very expensive way of life and, because I can only work part-time in order to support Sam for all of his appointments and short school days, so our finances are going backwards. Due to the autism diagnosis, we were able to receive a modest NDIS package. Every little bit helps, and this helps with allied health bills and education support.
ARFID has been a part of our life since Sam was a toddler, but we only knew it last year, when after him growing a lot in height, but with no weight gain, made him so unwell. I now know why he was always complaining of feeling ‘woozy in the head’. His heart rate goes up by 30bpm when he stands. That’s enough to make you feel dizzy. The poor kid had been unwell for a while, but I was so distracted with life’s busy schedule, that I didn’t notice.
Since we left CAMHS we’ve found it difficult to find therapists who understand ARFID and who connect with Sam. After a year, we are now just forming our team of supports. We changed GPs late last year (our regular GP suggested I pay Sam to eat) and she’s really supported us to build a team. Through Eating Disorders Victoria, we’re linking in with a dietitian and a psychologist. Sam has seen a hypnotherapist a couple of times, but with limited success. Apart from that, I’m trying to arm myself with as much information as possible so I can be the most consistent form of support for Sam. Sam’s put on 8kg, but it is still very variable with him losing weight some weeks and putting on in others. I am not at a stage yet where I feel confident that he is on the road to wellness and can look after his own health.
Sam and I are actually closer now than we were before. I’m more aware of his needs and we’ve done lots of talking about what I can do to support him that’s helpful (and not helpful). I feel that I have been able to educate some of my friends and family about ARFID and that this has really opened up discussion about eating disorders. Eating disorders are somehow considered a private and taboo thing to talk openly about. There are thousands of kids suffering from eating disorders like ARFID, but we keep this information private because the behaviour is not considered ‘socially acceptable. More open discussion about ARFID and other eating disorders is key to decrease the shame and anxiety, and increase awareness and strategies to help. My hope for the future is that ARFID is something everyone has heard of, especially health professionals!