Welcome

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This is a blog for anyone who is interested in learning about the impact of ARFID on daily life.

Why blog about ARFID?

Having a family member with this condition has impacted my family on many levels. Sharing my story with health professionals many times along the way, constantly explaining to family and friends about why my child won’t eat, and fighting for this to be recognised as something bigger than just ‘fussy eating’, has become part and parcel of our family life.

At the centre of it is a child who finds that apart from a small number of ‘safe’ foods, he just can’t eat anything else.

My partner and I first heard the term ‘ARFID’ after our son was discharged from a year’s worth of outpatient care at the Food and Eating Disorders clinic at Great Ormond Street Hospital in 2018. OJ had been treated there due to a refusal to eat solid food, and what we observed as severe anxiety at mealtimes and in ‘food situations’ such as family gatherings, playdates, baby groups, outings, picnics and visits to cafes. Click here for OJ’s story.

ARFID stands for Avoidant/Restrictive Food Intake Disorder, and was a term coined in 2013, when it first appeared in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013). It has also previously been known as Selective Eating Disorder. Find out more about ARFID here: further information

The ARFID Awareness UK website says that:

ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts). Avoidant and restrictive eating cannot be due to lack of available food, or cultural norms (e.g. someone who is fasting or chooses not to eat certain foods for religious or cultural reasons alone).

Unlike other restrictive eating disorders ​ARFID isn’t affected by a person’s beliefs about the size and shape of their body, and a person with ARFID doesn’t restrict their food intake for the specific purpose of losing weight. In addition, ARFID doesn’t feature some of the other behaviours that can be associated with anorexia, bulimia, or OSFED, such as over-exercising.

I decided to create this blog when I realised there were many others like us, struggling at home with a child or family member that won’t or can’t eat.

There is very little guidance or knowledge about how to treat ARFID, and therefore as parents we feel we have been largely left to fend for ourselves, dealing with a situation we feel is more than just ‘fussy eating’ but without any idea of the right way to go about it. Despite trying many strategies over the years (our own and those given to us as part of OJ’s treatment at GOSH) we have yet to see any lasting improvement in OJ’s eating behaviour. Like many others in our situation, the social implications as he gets older are what we are most concerned with, along with the worry about his long-term health and physical development.

My hope is that by sharing our story, we can help to raise awareness, connect with and support others, and find our way forward from a bewildering experience that has defined our son’s relationship with food, and profoundly impacted our family life for nearly a decade.

Published by dancinglottie

Mum, ballet teacher, sports massage therapist. I love the great outdoors and wildlife. Dabble in local politics now and then. Worry about environmental issues quite a lot. Miss NZ every day, but love living in Hertfordshire.

14 thoughts on “Welcome

  1. I know first hand the suffering that OJ and his family have been through.
    Yet I also know his mother is truly beautiful, she shows knowing but love and compassion in all she does and tries to do for him and his brothe. She works tirelessly at trying to find other ways to make him feel better and less stressed, often to her own detriment. Living with OJ has had an affect on all in the family and has put great pressure on family dynamics and relationships. But know this OJ has the most beautiful mother x x Thanks x x

    Like

  2. Hi.

    I looked for a contact form and couldn’t find one so am replying here, hope that’s OK.

    You say you realised “there were many others like us, struggling at home with a child or family member.” Have you spoken with many adult sufferers? I was OJ, 40 years ago, and to some degree still am. I’m happy to discuss my experiences if it’d help.

    Good luck.

    Alan.

    Liked by 1 person

    1. Hi Alan,

      Thanks for your message. I haven’t spoken to many people directly, as we have only recently started reaching out and speaking publicly about our Arfid journey (and this blog is fairly new still).

      But I’m on a few facebook support groups, which is where I realised there were others out there like us too. There are a fair few adults with Arfid on the facebook groups. The Arfid Awareness UK facebook page and website is where I first gatgered information and support. A lot of the focus on the groups seems to be on Arfid in children, but disussions and threads generally involve everyone, and there are perspectives from adult sufferers as well as parents of child sufferers.

      I think there needs to be more acknowledgement of the experiences of adults with Arfid, and in particular those like yourself who have lived with it from childhood through to adulthood. I’d be very interested in hearing your story, definitely.

      Regards,
      Charlotte.

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      1. Aye, cool.
        Do you want to give me an email address or something? I’m not sure as I want to throw my life story into the public domain just yet…

        (Apologies for the duplicate post below, WP glitch, feel free to delete)

        Like

  3. Hi.

    I looked for a contact form and couldn’t find one so am replying here, hope that’s OK.

    You say you realised “there were many others like us, struggling at home with a child or family member.” Have you spoken with many adult sufferers? I was OJ, 40 years ago, and to some degree still am. I’m happy to discuss my experiences if it’d help.

    Good luck.

    Alan.

    Liked by 1 person

  4. Hi Charlotte,
    I believe my 10 year old son falls into the ARFID category. It’s been a constant struggle to feed this kid.
    I often ask him what I can do to help him try new foods. Preparation, color, texture and flavor all play in to his decision as to whether or not to try new foods. His diet is extremely limited. He will not try any combined foods like a sandwich or pizza, only single items, often times only one item at meal time. He is painfully thin, but generally healthy. His decisions on food have never been about his weight, mostly about how a food looks and feels. I stress every day while making his lunch which consists of the same few items every day. We have supplemented with a protein drink for years now.
    One thing that we tried that helped a little was to make a list of foods that he will eat and a list showing new foods that he will try. We have used the “new foods” list as a reward or more like a goal/challenge that has resulted in our son trying new foods. Sometimes he will say, “I like it, but I’m not going to eat it”….so frustrating…. Just, wanted to say you are not alone and it’s an interesting challenge..

    Liked by 1 person

    1. Hi, thanks for your kind words, and for sharing your experiences and thoughts. Yes, it’s definitely frustrating and a real challenge on a daily basis, but you are so right in that we are not alone, even if it feels like it at times. I’m finding that there is a lot of empathy and support in the online community, and this really helps.

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  5. My 14 year old was diagnosed 5 months ago and all we get from our eating disorders team is “it’s dangerous to be this underweight, you need to eat more”. She knows, she doesn’t want to be so thin, but no-one is helping her. The only mental health support on offer is to be referred for an autism assessment, even though she has no other autism symptoms, where we live the waiting list for that is about 2 years, so that is no help at all. Thank you for helping to raise awareness.

    Liked by 1 person

    1. Thank you for your comment, and for sharing your experience. It sounds like a very difficult situation for you, your daughter and your family. The current system of access and support definitely needs improvement, especially in recognising the different ways that Arfid presents, and in order to help EVERYONE regardless of whether they have additional needs or not. Best wishes with your journey to getting some help and support for your daughter. Sending strength and solidarity your way🙏

      Like

  6. I’m so glad that I found your blog!
    Our son is 8 years old and struggling with eating for about 5 years now. He has very strong food allergy. His eating problems started after an anaphylactic reaction.

    I’ve always thought that we are the only family with such problem. We have blamed ourselves for this.

    We are from Poland and no one has heard of ARFID here. Thank you for shearing your experience!

    Liked by 1 person

    1. Hi Monika, I’m so pleased you like the blog and I do hope it helps. We have found that reaching out to the wider ARFID community has been very helpful, as dealing with OJs eating issues does feel very isolating at times. Like you, we felt like we were the only ones going through this for many years. It was wonderful to find a thriving community online, even if we still feel frustration at the difficulties with getting clinical support. I can recommend looking at the ARFID Awareness UK website, and also if you are on facebook their page provides a lot of information and support. Keep in touch, and all the best to you, your son and your family.

      Like

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