‘I only ate tuna for years and didn’t know why’

I have always been a picky eater. As a young child, I refused to eat anything but tuna for several years. The paediatric nurse advised my parents that I would “grow out of it”, but by the time I reached university, my avoidance of food had escalated to the point that I was struggling to eat anything at all.

Someone – I never found out who – raised concerns about my very low weight to university support services, and I was instructed to see my GP and a psychologist.

Despite never asking me any questions about why I wasn’t eating or what was driving my fear of food, healthcare professionals saw an underweight, young woman and assumed it was related to body image issues and a fear of weight gain. I was diagnosed with anorexia nervosa and referred for therapy.

I did my best to engage with the treatment for anorexia over the course of seven or eight years, but things did not improve, and I mostly felt confused, pigeonholed, and very misunderstood when interacting with healthcare professionals.

I was unable to articulate what was really going on for me in a way that psychologists would understand or take seriously. I felt powerless to alter their tightly held assumptions, and so I eventually stopped trying.

When I graduated university and started work, 10 years of suffering from an unaddressed eating disorder caught up with me. My mental and physical health declined rapidly, and I was admitted to an inpatient eating disorder unit for treatment of severe malnutrition and refeeding via a nasogastric tube.

I was in hospital for six months, and while there I was lucky enough to meet an occupational therapist who took the time to explore with me the reasons for my distress.

I explained to her that I had always had an extreme fear of touching certain fabrics, being in loud, crowded, or bright spaces, and that couldn’t stand the feeling of sand on my skin so much that as a child I forced my parents to put plastic bags on my feet if we ever went to the beach, hysterical at the thought of coming into contact with a single grain.

I explained that I had that same feeling of repulsion and disgust at the thought of eating most foods or trying anything new, and that this had been consistent my whole life. I explained that I wasn’t afraid of looking fat, but was afraid of all the sensations related to preparing and eating food; the smells, the sounds, the tastes, the mess, and the feelings associated with digestion.

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She did a sensory assessment with me and discovered that I was suffering from severe sensory processing issues, which she told me were a sign of autism. When I called my mum and explained this conversation, my mum confided in me that she had always thought I had autism, and so I agreed to be assessed.

I received my autism diagnosis halfway through my hospital stay. Following my discharge, I approached an autism-specialist counsellor and, for the first time in 10 years, felt taken seriously and genuinely understood. During a review I had with an eating disorder specialist psychiatrist, I finally had the words to explain my fear of food.

The psychiatrist told me that she didn’t think I had anorexia nervosa after all, but rather, avoidant-restrictive food intake disorder, or ARFID.

This new, correct diagnosis has given me the language to explain why I’ve always struggled to eat normally and maintain a healthy weight. More importantly, it has helped dispel some of the shame and guilt I felt for never getting better when I was being treated for anorexia.

However, receiving the correct diagnosis so late has impacted me severely, particularly in relation to my physical health; I now have low bone density and a range of other irreversible health complications.

Moreover, when my diagnosis got changed from anorexia to ARFID, I was informed that the NHS does not treat ARFID and was discharged from all eating disorder services despite continuing to struggle greatly. I’ve still never received any specialised support for ARFID, and it continues to severely limit my physical health, my ability to socialise and make friends, and my self-esteem and confidence.

I’m now shifting my focus from trying to recover from my eating disorder to trying to find ways to live my life around it. I’m working on giving myself some compassion for having “weird” habits around food and am slowly trying to expand what I’m comfortable eating on my own.

I don’t think I’ll ever be a “normal” eater, and I might never be able to go to a restaurant or eat at a friend’s, but I’m not going to let that stop me from living a full life. My hope is that by sharing my story, the severity of ARFID will be recognised and treatment options will become available for others who are suffering.

To get information about and support for dealing with eating disorders visit www.beateatingdisorders.org.uk