This post has morphed into something unexpected. What started as a post about the difficulties in sourcing OJ’s safe foods has turned into one about the power of empathy and kindness! Amongst all the daily stresses and difficulties living with ARFID, it is good to take a moment to acknowledge some of the positives that have come out of our journey so far. In seeking answers and by sharing our story we have discovered others in a similar situation, all with their own unique stories and experiences of ARFID.
On 27th November 2021 an article on the BBC news website described the kindness shown to a family who had been affected by a Walkers crisps supply problem. Michelle’s daughter Ava has a number of conditions, including ARFID. The family were sent boxes and boxes of a particular brand and flavour of crisps which form a major part of Ava’s diet, by members of the public from all across the country. Michelle had previously featured in an article earlier that month, highlighting the impact the shortage of the crisps had on her family. Sadly, following this first article, Michelle experienced some upsetting and negative comments about ARFID, some of which also questioned her parenting. Hence, it was heartening to see that amidst the negative comments, came an overwhelming flood of support from people everywhere and their kindness in sending Michelle’s family the crisps that her daughter eats. You can see both articles here.
Michelle’s story, which I have shared with her permission, highlights just one of the daily worries facing families of those with ARFID. When your child only eats a very limited range of food, and when that food is brand-specific or limited to one particular type or flavour, there is always the fear that it won’t be available.
OJ eats one particular brand and flavour of baby rice crackers, and these form the main part of his daytime meals. If we are out for the day or invited somewhere for dinner, we always have a packet to hand, in case there is nothing else he can eat. A couple of weeks before Christmas I had a whatsapp message from my partner who had gone to do the weekly grocery shop and discovered there were no rice crackers in the flavour that OJ eats. He went to three supermarkets before he found any. This happens to us regularly. And it’s not a case of just getting a different flavour, or an alternative brand, because OJ will only eat the one specific type. Even something as simple as a change in the branding or packaging can affect OJ – we’ve had this in the past with sausages and also with his rice crackers. During the early days of the Covid pandemic when there was a lot of panic-buying and supermarket shelves were bare, sourcing enough of his safe foods was a real worry for us.
Like Michelle, we have also experienced negative and judgemental comments from those who perhaps can’t fully appreciate the implications of reliance on such specific food items. It does make an already stressful situation so much more challenging. In particular, accusations of poor parenting are very upsetting. I can fully understand how this would look to someone who has no lived experience of ARFID. I wouldn’t expect anyone to understand what it is like without knowing the full back story of OJ’s eating history and how it all began. What is exhausting though, is having to explain it time and again, not to mention the feeling of being misunderstood and judged. Perhaps it is human nature to question and offer unsolicited advice, but sometimes it would really help to just be listened to, and to have our experiences accepted without question.
On New Year’s Day an article about ARFID was listed on the main BBC news website. The article featured OJ and several other families, including an adult with ARFID. It was really good to see an article about ARFID that included the experiences of adults too! There were comments and input from two psychologists, and also Nicole Kirkland from ARFID Awareness UK. Click here to read the article.
There was a really positive response to the article on social media, with lots of people getting in touch to share their experiences or to reach out for advice. Several comments mentioned the fact that it was raising much-needed awareness. A comment from a parent with a child the same age as OJ, said that the article is “a ray of light to help understand what she might be experiencing and help us as parents.”
The response really highlighted the impact of ARFID on people’s lives, and the difficulties with referrals and access to clinical support experienced by so many. Lots of those with ARFID or those with family members with ARFID also mentioned the struggle to have their daily experiences accepted without judgement. One person commented, saying, “knowing what it is may not cure it, but it goes some way to explain to new people that the way I eat isn’t just me – ARFID is real and has serious effects on the lives of sufferers and their families.” A number of the responses made the important observation that the condition presents in those who are neurotypical as well as those who are neurodivergent, and point out the resulting challenges this brings in having their concerns heard and accepted.
I also noticed more empathy in responses from those who had no experience of ARFID or who hadn’t realised the effect and impact of ARFID on daily life. I received this message from a relative who lives in Australia:
“You know, you could always be seen as one of those helicopter parents, or being neurotic, or just playing into your child’s whims… lol, don’t you love people that judge or have never lived a day in your shoes?!! Or that have zero understanding but put their 2 cents in anyway? I know this. But stick at it. You know your child best.”
This is the type of response that accepts and empathises, rather than judges. It came from someone who works in healthcare, but like many is largely unaware of the daily impact of the condition. When it feels like there are walls going up with everything you try – constant refusals for referrals, negative or unsympathetic comments, and dismissals of your own behaviour as neurotic – a comment like this one can be like a little hug. It gives me hope that amongst all the judgment and scepticism are those who will just listen and accept without question.
OJ is only just beginning to talk about it all, and he has a growing awareness of his eating issues and the implications as he matures and develops. Talking about it can be overwhelming for him, understandably. So, taking part in the article was a leap of faith for him and for us as a family, and we questioned whether it was the right thing to do. But it has allowed OJ to have a voice, and it has been so important for us to hear how it feels for him – in his own words! If this helps even just one other person or family with ARFID, then it has definitely been worth it.
Simple acceptance of our lived experience is a very powerful thing. Connecting with others in the same situation contributes to feeling supported and acknowledged. Putting our story out there, and taking part in news articles is very scary, but also cathartic. Overarching all of this is the importance of empathy and kindness, which make all the difference to anyone and everyone on this journey.