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“You are more than your eating disorder” – What do people affected by ARFID wish we knew?

We know Avoidant/Restrictive Food Intake Disorder (ARFID) doesn’t always get the airtime it deserves… and it’s time to change that.

We asked people affected by ARFID – either by experiencing it themselves, or through caring for a loved one - what they would like others to know about it. Some clear themes emerged, around the common perceptions, misconceptions and lack of awareness that often sadly accompanies this condition.

Let’s get the conversation started…

Those with experience of ARFID

It's not just 'picky eating'. It's a genuine medical condition that needs to be recognised as such."

"What they said…

What we heard…

There’s a shared frustration from many people with ARFID about a lack of understanding and compassion. ARFID impacts relationships with food and oneself significantly. It's not just about the act of eating; it can involve anxiety, irrational thoughts, and complex emotional responses to food.

We know ARFID is not generally well-known, and there's a call for increased awareness and education about the disorder, both within the general public and the medical community. We all can – and should – do better.

Carers of someone with ARFID

"Don’t back down if you believe your [loved one] needs more support"

What they said…

What we heard…

ARFID is not a voluntary behaviour. It’s not just being ‘picky’: ARFID is a psychological disorder – we know how important it is to remember the person with ARFID doesn't want to have these feelings surrounding food.

So, what can carers, friends, family, professionals and anyone else caring for someone with ARFID do to help? Here are some top tips:

  1. Understanding and patience
  2. Acknowledge the complexity of ARFID and the need for understanding, patience, and validation of the person's feelings and emotions.
  3. Advocacy and Education
  4. Advocate for their loved ones, educate themselves, and raise awareness about ARFID in various settings, including schools and healthcare systems.
  5. Seek Support
  6. Encourage individuals to reach out for support, connect with others who have similar experiences, and seek professional help.
  7. Remember it’s not Fussy Eating
  8. Distinguish ARFID from fussy eating and urging against pressuring individuals to eat foods they're not comfortable with.
  9. No Blame
  10. Stress that ARFID is not the fault of the individual or the caregiver and dispelling guilt associated with the disorder.
  11. Focus on Wellbeing
  12. Reduce pressure and focus on the wellbeing of the individual rather than making lots of suggestions or trying to stick to conventional mealtime practices etc.

Remember, despite the challenges there is hope.

Anyone with disordered eating has the potential to improve their relationship with food over time, especially when they - and the people around them - have the right tools for support. Small changes and successes shouldn’t be overlooked; It is important to acknowledge and celebrate every victory, however minor, on your journey with ARFID.

Help us to keep amplifying ARFID...

Will you donate and help us to keep the spotlight shining on ARFID?

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