Gaps in eating disorder understanding

You may have come across a story circulating this week about a teenage boy in the UK who went blind because his diet was limited to chips, white bread and processed pork.

The 17-year-old developed a condition called nutritional optic neuropathy, initial symptoms of which had already been reported when he was 14.  The condition is progressive, is usually the result of folic acid and B complex deficiency and is reversible if treated early enough.  Unfortunately, in this boy’s case, it was too late.

The fact a person can go blind from a poor diet is worrying, in itself, but the bit that alarms me most is how the boy is described in reports as a ‘fussy eater’ with a ‘normal BMI’.  The reason it alarms me so much, is it highlights the lack of understanding primary care still has when it comes to eating disorders.  This kid had presented to his GP multiple times from the age of 14, with symptoms related to nutritional deficiencies.  But it wasn’t until he had gone blind, years later, that he was finally referred to eating disorder services.

Until that point, he had been considered a ‘picky eater’ when it looks like he actually had a serious eating disorder called avoidant-restrictive food intake disorder (ARFID).  It’s really common for ARFID to be missed or mistaken for being ‘picky’, partly because it’s a relatively new diagnosis and because fussy eating is common in children but, mostly, general practice needs to be far more up-to-date on eating disorders than it currently is, both here and abroad.

One of the biggest mistakes made when it comes to eating disorder diagnosis is a reliance on BMI.   A major obstacle to people receiving appropriate treatment for an eating disorder is the belief they have to be ‘underweight’ to have one.  And, often, this misconception results in very sick people not getting the treatment they so desperately need, simply because they have a normal or higher BMI.

I think there’s room for us all to be more informed about eating disorders.  They are the deadliest mental illnesses and they can affect anyone, of any gender, race, age or background.   But they are widely misunderstood, even by many of the health professionals we rely on to identify them.  We owe to kids like the boy in this story to do much better.

For more on eating disorders you might be interested in: Gaps in eating disorder understanding, 9 ways to support someone with an eating disorder at Christmas, Too healthy for your own good, The long run: A path to understanding bulimia nervosa or How to help when eating is scary