We Are Not Being Fussy
Developing the campaign
#WeAreNotBeingFussy
This Eating Disorders Awareness Week is shining a light on ARFID - a health condition that doesn't always get the attention it deserves.
Why ARFID?
ARFID stands for avoidant/restrictive food intake disorder and is a little known and misunderstood condition. ARFID can have serious consequences for health if left untreated.
The number of people affected by ARFID is unknown. Treatment is not available nationwide and people with ARFID, or who suspect they may have it struggle to access the help they need
Creating the campaign
Once we had decided on our theme, we asked the ARFID community to share their stories through a survey which ran in October 2023. This gave us insight into the experiences of those affected by ARFID and helped shape our campaign messaging.
The campaign was also shared with lived experience volunteers as it developed for feedback and input.
It's not just 'picky eating'. It's a genuine medical condition that needs to be recognised as such. It's not easy for me to try new foods, so please don't pressure me to.
To ensure our messaging was informed by the latest evidence, academics from the University of Aberdeen, University of Edinburgh and Cardiff University kindly produced a brief literature review of ARFID research for us. The key themes from the review were:
- There is a lot of uncertainty about the prevalence of ARFID in the general population, with estimates varying widely (between 0.3%-17.9%) across different studies
- ARFID is more common in autistic individuals and people with ADHD than in neurotypical people (though do not exclusively go hand in hand)
- Typical age of onset is thought to be younger in those with ARFID relative to other eating disorders
- There has been relatively little research into ARFID treatment, which partly contributes to the variable service provision
- Consequences of ARFID can include weight loss, compromised growth, gastrointestinal problems, and significant malnutrition
- ARFID has serious impacts on social relationships, and engagement in education and/or employment
- Barriers to treatment include: lack of awareness and education, stigma, misconceptions around its severity, and lack of standardised care pathways. It is not known how long it typically takes to access diagnosis and treatment.
We Are Not Being Fussy
We brought all this information together to build a campaign that speaks to the general public using real stories to build on the narrative that #WeAreNotBeingFussy.
Told from the perspective of those with ARFID we build a strong narrative to build an emotional connection.
"In a world bursting with flavours our plates are full of challenges, not choices.
There’s so much we want to tell you about how ARFID affects and impacts our whole lives.
We’re not fussy. We don’t choose to avoid or restrict food. Some of us can’t stomach tastes and textures. Some of us are afraid we might choke.
Other people seem to enjoy the build up to a meal. We can’t think of anything worse.
Food is a battle that extends way past the dining table. It can follow us everywhere, from the supermarket to work or school.
Even after mealtimes, there isn’t any respite because the fight for recognition and access to treatment is a long way from being won.
And then we’re told that this could also seriously damage our health.
Avoiding the thing that’s supposed to keep you alive isn’t something people easily understand. So, we usually hide our struggles to avoid the judgement, stigma and the endless questions and suggestions.
For us, every bite can be a battle. "
#WeAreNotBeingFussy
What's Next
Throughout the week, we’ll be highlighting and sharing stories from some of the people we spoke to who’ve have been affected by ARFID. (You can read some of these now.) You can like and share our video and social posts or just generally spread the word that #WeAreNotBeingFussy .
If you have a story to share, we’d love to hear it – share your story.