ARFID: THE EATING DISORDER THAT ISN’T GETTING THE RECOGNITION IT DESERVES

                                             

               Most people are aware of the two main eating disorders. Anorexia and Bulimia Nervosa are very much accepted as eating disorders by medical professionals, and in society, too.

However, an eating disorder called ARFID (Avoidance Restrictive Food Intake Disorder) is one that is less in the public domain.

ARFID is an eating disorder that affects both children and adults and is something that can often be rooted back to trauma in early childhood. Trauma that seriously interferes with that individual’s relationship with food and drink, causing them severe anxiety, and preventing them from doing what most people see as totally natural.

This new kid on the block is also being largely ignored or played down by the medical sector. Lack of funding means that these sufferers are left to live with this debilitating and life-limiting condition (with little or no help).

        Yet, ARFID has been on the DSM-5 (diagnosis and statistical manual) since 2013, and it really isn’t acceptable to use monetary constraints as an excuse to not help those suffering from it.

If these same children were all obese, the system that denies them would be falling over themselves to offer support and guidance. Yet, just because many ARFID sufferers are not of abnormal weight, they are deemed to not have any need for assistance.

Parents/carers are left alone to struggle with trying to manage life with their ARFID children.

These children often find themselves being labelled as picky eaters, and their issues get seen as being behavioural. The attitudes of ill-informed individuals, whilst likely unintentional, then create a stigma that adds to the anxiety these individuals already have.

More awareness is needed around this condition to get rid of the awful stigma around ARFID so that some of their anxiety can be reduced.

I shall now tell of my own personal account of living with a child who displays all the characteristics of ARFID, to demonstrate the wider effect of the condition. It really is something that affects the whole family and not just the individual themselves.

      My daughter Jessica was born near her due date. She was a decent weight, and seemed to be perfect in every way. Yet, for some strange reason, she would not take her milk. Cup feeding was suggested by the midwife whilst in the hospital, with a caveat that I shouldn’t continue this once I got my baby home.

No support was offered, and no investigations were done, to find out why she would not feed in a normal way. I struggled at home to get enough nutrition into my daughter and was even accused of deliberately starving my own baby (at a weigh-in session, at my local health centre).

My daughter was not gaining weight as she should have, and I was spending long hours trying to coax her into having her milk.

Doctors were dismissive and commented that she was a happy, smiling baby.

Eventually, she stopped wanting her milk at all, and we, as parents, reached a crisis point. We knew that we had to take action to get to the bottom of our daughter’s milk refusal. I ended up in the hospital with her when she was just 3 months old.

        After much persuasion, paediatrics found out that she had silent reflux (a condition where stomach acids flow back up to the oesophagus). Although medication was then prescribed to her, my gorgeous baby would still only feed minuscule amounts.

It became clear that a nasal gastric feeding tube was the only solution to the problem. However, this proved to only work for a few months before my daughter started gagging and throwing up these forced feeds.

Early weaning had started at 4 months, and it was accepted that the tube feeds would stop because they were proving counterproductive. Initially, our daughter seemed to be thriving on solids, but it wasn’t long before she was refusing food and drinks again, and we found ourselves struggling once more.

Again, we turned to medical professionals for help. We were desperately needing their assistance, to help our daughter to overcome her fear of food.

       During this time, I found a really good and supportive Facebook parent support group (ARFID support for parents & carers in the UK/Ireland).

Whilst none of these wonderful parents/carers claimed to be medical experts, they did have young people who are living with the condition, and they could offer first-hand experience of living with an ARFID sufferer.

This group has literally been a lifesaver because I realised I wasn’t alone.

Other parents were able to empathise and understand the frustration, anguish, and difficulties I faced every day. The group also offered an opportunity to chat with others, who just got how the whole experience literally ruled your life.

I also realised that I was not the only parent who felt like they were banging their head against a brick wall. It is wrong that parents should feel abandoned by a healthcare system that is meant to be there for everyone.

      Fast forward to now, my daughter turns 9 soon, and not much has really changed.

Our daughter barely grows, and she is only just in the healthy weight zone.

Generally, she is happy and educationally she is where she needs to be. However, it is far from normal that she gets 2 years of wear out of all of her clothes.

Yet, the official medical response is: ‘well, you aren’t a tall person, and some people are just petite.’ That’s not a helpful response, or one than inspires any confidence. However, these were very similar words to what other people who aren’t living with this also come out with.

The comments and judgments from extended family can really add to the feelings of utter despair.

Although, they cannot be blamed for their view of the situation when there is little real awareness of ARFID to change their minds. They really are only copying the narratives of what most media articles put out there about this eating disorder. It is these narratives that need to change.

     Greater awareness is long overdue, and that is why I felt compelled to share about my daughter and her journey with ARFID.

My hope is that somewhere out there, are experts who might consider taking up some research to get the condition better recognised. In a world where people demand evidence to support any claims that are made, research into ARFID could provide the evidence that could put the disorder firmly on the map.

Properly funded research could change attitudes, and maybe even persuade those who control the purse strings to make sufferers a priority.

It really isn’t easy to sit back and watch the child you love refusing to do the most natural thing in the world.

On a concluding note: to those who believe no child will deliberately starve themselves and will eat when they are hungry – you really have to be in the shoes of a parent with an ARFID sufferer to have a concept of the reality we face.

ARFID really is something that seems to defy logic. And yes, the sufferers will literally starve themselves.

Published by Karen Burns

A 50-year-old mother of 3. Graduated from Warwick University in 2021 (with a degree in Social Studies). I have chronic illness, which affects my mobility. However, I love writing and I am a prolific writer of poetry as well.

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