Bee's story - Raising Awareness for ARFID and Mixed Eating Disorders

My journey with disordered eating has been a long one. While I’d had certain tendencies since childhood, it was during university almost ten years ago that I was first diagnosed with anorexia nervosa. While I was undoubtedly very unwell at this point, something about that diagnosis didn’t feel quite right in a way that I struggled to put into words at the time.

In some ways, anorexia did fit. I would fear eating “too much”, would feel guilty for eating certain “bad” foods, and would feel the need to compensate for things I had eaten by restricting afterwards. However, none of this was driven by body image concerns, which is something that many professionals assumed, and I was not engaging in other compensatory behaviours apart from restriction (so no overexercising etc).

Meanwhile, there was another side to my eating disorder which never seemed to properly register with the professionals. This was closely linked to my Irritable Bowel Syndrome (IBS), which had first developed during my GCSEs (and actually I’m currently undergoing medical investigation to see if I could have another gut disorder). This condition was causing me a lot of gastrointestinal symptoms, and I developed the belief that these symptoms were caused by the foods I was eating, and that cutting out certain foods would bring relief. I also felt constantly bloated and had very little appetite, which made eating feel impossible.

Over time, my diet grew more restrictive and I became severely underweight. Again, body image was not a factor here. I hated looking so unwell and wanted more than anything to have my hunger cues back and be able to eat normally again.

After a lot of self-reflection and research, I have now come to realise that this part of my experience was due to a whole separate condition: Avoidant Restrictive Food Intake Disorder (ARFID). ARFID is a wide-ranging condition with three primary subtypes, mine being the fear of aversive consequences subtype (i.e. avoiding or restricting foods because you are afraid eating will cause something bad to happen, in my case gastrointestinal distress). One core feature of ARFID is that it is not driven by body image concerns or a desire to lose weight.

Due to a general lack of awareness of ARFID, it has taken me almost ten years to identify with this condition. During my second round of treatment which ended last year, my diagnosis was updated to OSFED (Other Specified Feeding and Eating Disorder), however I would describe it as something anorexia-like plus ARFID (“ARFIDrexia”, if you will). Technically you can’t be diagnosed with ARFID and another eating disorder, but apparently my disorder has not read the textbooks!

Having been diagnosed and treated solely for anorexia for so long has caused me a lot of confusion and misunderstanding over the years. I believe that my particular circumstances caused a delay in being diagnosed with any sort of eating disorder: I remember at an early GP appointment where the GP seemed to be looking for an anorexic stereotype, and was just not asking me the right questions to notice what was wrong.

During hospital treatment, I felt isolated from the other patients because my experience did not seem to match up with theirs, I even felt like I was doing anorexia “wrong”. A therapist would explain to me that “hunger is one of the first things to go when you’re restricting”, but hearing this just wasn’t enough to help me eat given my extreme fear of aversive consequences. At that time, I did not have the words nor the confidence to explain these thoughts.

Looking back, I am sad (and quite angry) that my ARFID went unrecognised for so long. I understand that ARFID requires a different, more gradual, treatment approach than other eating disorders, and I have to wonder how things might have turned out if I’d had a different diagnosis from the beginning. Coming to terms with my misdiagnosis and all that it has cost me over the years has been a very emotional process.

Sadly, I am aware that my experiences are not that unusual amongst those with ARFID. While attending Beat’s ARFID support groups, I have come across many people who have been unable to access treatment for their ARFID, who have gone undiagnosed or misdiagnosed, or have been wrongly treated for anorexia. ARFID remains an under recognised and poorly understood eating disorder, despite estimates that it may be as common as anorexia. There are currently no official guidelines for treating ARFID in the UK, and many eating disorder services do not diagnose or treat it.

I hope that this blog will help raise awareness of ARFID and help others to see that they are not alone. Most of all, I am writing to do my small part in advocating for much needed change in terms of ARFID recognition and treatment.