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I’m not a “fussy” eater… I have ARFID

For Eating Disorder Awareness Week, Tahlia, 26, shares her experience of being misunderstood as a "fussy" eater, and misdiagnosed with Anorexia Nervosa, before finally receiving her ARFID (Avoidant/Restrictive Food Intake Disorder) diagnosis at the age of 20.
I’m not a “fussy” eater… I have ARFID

I’m not a “fussy” eater… I have ARFID

For Eating Disorder Awareness Week, Tahlia, 26, shares her experience of being misunderstood as a fussy eater, and misdiagnosed with Anorexia Nervosa, before finally receiving her ARFID (Avoidant/Restrictive Food Intake Disorder) diagnosis at the age of 20.

I have now been diagnosed with ARFID for around five years. Five years of finally understanding why I struggle so much with so many aspects of eating, and five years of realising I wasn’t alone.

Early Days  

Looking back to my childhood now, the signs were there that something wasn’t right. I had to be woken up as a baby for feeds, now realising this was likely because I very rarely feel hunger. I struggled a lot in school and wouldn’t eat anything at lunch times, the smells were very overwhelming. When I refused to eat, I was dismissed as fussy eater and everyone was sure I’d grow out of it.

Teenage Years  

School can have its ups and downs for everyone, but this was where I noticed how different I was from those around me. Due to the limited diet I had growing up, I was underweight, and still extremely fussy with foods. I had lovely friends who supported me, despite no knowledge yet of ARFID.

Lunch times were so uncomfortable, to the point where I sought help from a school nurse. I described my symptoms to the nurse, which at this point mostly consisted of extreme aversions to most foods, feeling sick and weak all the time, occasional fainting, and struggling to eat during the school day. Luckily the nurse was able to refer me to CAHMS in my local town and soon enough I began treatment.  

Outpatient at CAHMS  

After an assessment, it was decided I would see a dietitian at CAHMS every week, where I would present her with a food diary of the week just been, in order to treat Anorexia. I knew something felt off at the time with this diagnosis, but I was happy to finally be addressing some of these issues with food, and taking steps towards normality. 

After a good few weeks there, it seemed nothing I could do was right. My food diaries were criticised, because I was eating the same things every day. However, I felt that even just consuming the calories felt like a win at that point. ARFID of course was not mentioned, as ARFID wasn’t introduced as an eating disorder diagnosis until 2013. There was also no addressing of my thoughts and negative feelings towards eating in general, so eventually I discharged myself and decided to focus on eating three meals a day to get my weight up, even if I was repeating meals or eating things that weren’t the most nutritious.   

The Big Move to Uni  

After a few years of managing to eat three meals pretty consistently, I was in a better place with my weight, had my fainting under better control and wanted to start the adventure of leaving home. I decided on Cardiff as I had family nearby and could easily travel back, but obviously there were a lot of worries around the Uni experience and how to navigate shared kitchens, flatmates and generally becoming an adult while essentially eating like a child. I think there was a lot of embarrassment around it for me at this age. Trying to meet new people and live a normal Uni life with an eating disorder was really difficult, but I was very lucky to have lovely flatmates. It was during this time that I sought help again and eventually got referred to a therapist who explained what ARFID was, and everything clicked into place. We did a twenty-week treatment, a mixture of CBT and exposure therapy over the lockdown, and I learnt a lot about it and made sense of a lot of things over the past two decades.  

The Recovery Process

It’s been a few years since my diagnosis and treatment, and there have been ups and downs, of course. I thought my referral and diagnosis was going to be a cure, but I learnt that recovery would be a journey, one that I’m still very much on. I’m not sure I’ll ever see a place where I’m fully recovered, but learning more about ARFID has helped me see a future where I live with it, without it totally controlling my life. I want you to know that support is out there, whether it comes from medical professionals, trusted friends or understanding family. 

If you or someone you know thinks you may have ARFID,  or have been called a fussy eater, please check out our module on ARFID or read our  resource.

You can find ARFID specific support groups with Beat Eating Disorders UK.