For Eating Disorders Awareness Week, our client, Robbie, shares his experience of ARFID and his journey to accessing specialist help.
Let’s start with a bit of background – how long have you been living with ARFID for, and when did you realise that you had a problem?
I suppose that I have had this issue since I was of weaning age. My mother didn’t transfer me from liquids to solids very well, and would blend my food because she was afraid I would choke.
I knew from a young age – around five or six years old – that I was different. At other kid’s parties I was only able to eat the snacks available, as the sandwiches had fillings in them and weren’t plain bread and butter. I would also take the pastry off the sausage rolls and try to hide the actual sausage.
I managed to hide most of my symptoms throughout secondary school by having a packed lunch. But as I grew up and got into relationships from the age of sixteen, and then went off to university and into professional life, it became harder to conceal.
When did you know that you were struggling with ARFID specifically?
I had always thought I was a ‘fussy eater’, until around five years ago when I was watching a documentary about ‘Freaky Eaters’ and a lady whose symptoms were very similar to mine said that she had ARFID. Suddenly, it clicked that this is what I had – I wasn’t a fussy eater after all.
I went to the GP who told me that they didn’t know what ARFID was but referred me to an NHS nutritionist. Unfortunately, the support they offered wasn’t specific to ARFID; rather, they advised me to eat a healthy, balanced diet – a recommendation which was useless for me.
After this I started to consider different therapies like psychotherapy and hypnotherapy. After a few years of trying anything and anyone I could find online (and spending a small fortune), I realised that I may need inpatient treatment from a mental health service.
I contacted one large mental health facility with clinics across the UK, but they couldn’t tell me with certainty that they treated ARFID specifically. Instead, they quoted a significant sum for an inpatient stay that treated all types of eating disorders together.
This was something I saw frequently – that most eating disorder clinics offered treatment that was across all diagnoses, not specific to ARFID. This wouldn’t be suitable for my symptoms which differ significantly from other eating disorders.
What was treatment like?
By the time I came to Orri, I had tried hypnotherapy, online ‘cures’, counselling, psychotherapy, Cognitive Behavioural Therapy (CBT), different diets, and EMDR (Eye Movement Desensitisation and Reprocessing), but nothing had worked.
It took between 6 – 12 months to find a treatment model that would work. With Orri, we worked together to devise a treatment plan that would suit me and my challenges, and I have since seen progress.
I have found working with Paula (Head of Dietetics) very helpful but noticed that I can do well for a month or two, then life will get in the way, and I’ll slip back into old ways and opt for the easy and safe foods.
This up and down trend feels pretty continuous, and whilst I know that it is a journey that I may be on for the rest of my life, I felt I needed some extra help to try and ‘rewire’ my brain.
Consulting my treatment team, it was deemed sensible to start CBT therapy with Amit (a Psychotherapist at Orri), and this has been positive so far.
My goal is to continually try new foods, as well as the newer safe – or almost safe – foods, but this is very tough. When you think about it, there are only a few hours between meals, so it can feel like a relentless struggle with no real end in sight. I have definitely made progress, but equally, there is an awful long way to go.
What is it like to live with ARFID? How does ARFID impact different areas of your life?
ARFID is not something I would wish on an enemy. I dread every meal, try to avoid eating, try to be busy – or out of the house at mealtimes – basically anything I can do to avoid the three meals per day.
Eating is such a simple thing that 99% of people probably don’t even think about: put something in your mouth and eat it, don’t like it, don’t eat it again and have something else instead. But it isn’t this way for me. It really is quite debilitating, especially in social and professional environments.
What was it like seeking help?
It was very difficult. I essentially went through thirty years of having the disorder without anyone diagnosing me or suggesting that ARFID may be a possibility.
When I finally learnt about ARFID and started researching, I noticed that most of the available information came from America, where it seems to be better recognised and treated.
It appears that sadly the UK is lacking behind in recognition and awareness. My impression was that GPs don’t consider it to be very important. If I’d bulimia for thirty years I’m pretty sure that I would have received help via the NHS, instead of having to refer myself for private treatment.
Where do you feel you are now in terms of your recovery?
I am doing ok, I could be doing better. I have a good plan and support in place but changing the habits and routines of a lifetime is very tough. I need to find a way to push through when my mind is trying to give me the easy way out.
What’s it like to be in recovery from ARFID? Do you have specific goals to work on?
I have fortnightly goals, which can be challenging because it’s a lot to deal with. But equally, if I am given more time I am likely to slack off and not put the work in.
I need to be accountable and meeting Paula and Amit gives me a purpose of explaining where I am, truthfully, and then working again from that point, good or bad.
What do you wish other clinicians or healthcare professionals knew about ARFID?
I wish it was spotted and screened at a very early age, for instance between three and five years old. The work could be put in to change a couple of years’ habits and the issue be put to bed, rather than it just being left as fussy eating, because then all of a sudden, that three year old is over thirty and struggling constantly with every meal.
What would you want someone struggling with ARFID to know?
Try to get diagnosed and receive help as early as possible. Explain how you feel, don’t be ashamed. It’s a disease as much as any other disease, and you wouldn’t be ashamed if you had cancer (god forbid), so there is no need to be ashamed of this disease. The sooner people are identified and helped, the more chance they have of some normality in life.
