HOW I DISCOVERED I HAVE ARFID

Hello, I guess I'm going to be using this blog post as a way to introduce myself. I'm Janey and I made this blog to help me learn to deal with ARFID and share the ins/outs of it as an adult who has it. Of course, there is an about me section but it doesn't really delve into how I started on my journey with learning to live with having ARFID. Before we get into this, please be aware that ARFID is an eating disorder and there may be some upsetting things to read. If you suffer with an eating disorder, and find any of this triggering, please do not read any further. Please understand this blog and the posts in the future are not here to glamourise ARFID or eating disorders. These posts are simply here for me to express my feelings surrounding ARFID and the struggles having it and to share the experience.

I wasn't always aware I have it. In fact, for a very long time I simply just thought my issues with food were just anxiety after a traumatic choking incident I had as a child in the car with a soft mint which I won't delve into too many details because it's still traumatic for me and I'd rather not traumatise everyone else. It wasn't until after decades of struggling with not being able to gain weight from dealing with it that I finally got a label for it that wasn't me being a picky eater or misdiagnosed having anorexia. For me, eating food was never about: 'how will this food make me fatter?' it was always about: can I swallow this food, will this food make me choke, and how long will this meal take me to eat? as well as other thoughts of people watching me struggle to slowly eat and/or spit it out and feeling ashamed I couldn't finish my meals like everyone else could.

For the longest time I was overwhelmed at meal times, I felt so much pressure growing up to eat as much as I can. I used to come home from school stressed and anxious because the dinner ladies at school would force me to eat something I couldn't manage, or I barely ate anything because I would have an anxiety attack and wouldn't be able to swallow or chew food so I would spend the day with barely any energy from not eating properly. There was one incident at school where I was the last kid in the dinner hall, and the dinner ladies and teachers forced me to eat a peach for dessert. I did and then I went home later that day and threw up. I've not touched a peach since, and that was almost thirty years ago. 

I don't like to speak for others regarding ARFID, but I've found it a common theme amongst other experiences I've read about or watched videos that these bad experiences with food and meal times sit with us, and throw us into a shame cycle. And sometimes we never get out of that shame cycle as hard as we try. I know for me, that shame cycle stopped me from experiencing a lot of things and still does.

I was starting to become more depressed and withdrawn from myself, and struggle to eat more meals whether it was because all of the food in front of me just didn't feel safe or because I felt disheartened by my inability to eat it. I would complain I was constantly hungry and the only thing I would eat throughout the day was the one meal my family cooked for dinner and I would survive off chocolate. At the time I had just started my relationship with my now-husband and he alongside my parents and siblings were concerned that my mental health and lack of motivation to eat was affecting my ability to gain weight. So I arranged a doctor's appointment, which was an at home visit because I struggle to get out of the house for months on time due to lack of energy and chronic anxiety. I discussed with my family GP the helplessness I felt around mealtimes surrounding my choking phobia and the depression, so I got put onto a waiting list with the NHS for CBT around mid 2022 and prescribed mirtazapine at 15mg to help with gaining weight and encouraging my body to feel hungrier as I weigh less than 40kgs and have hovered around 35-39kgs for most of my adulthood.

Fast forward to 2023 and I finally started my CBT treatment. At first I was sceptical that it could help me as I had gone through CBT before but for familial grief and the experience I had back then, again I felt forced to go at a pace I couldn't cope with to process all my feelings. But this time I tried to be a bit more open minded towards the treatment. At first I was only given 6 sessions, and we worked on various things to understand the trauma surrounding my choking phobia.  I went into the sessions with an outlook of: okay let's dip my toe into this and see how it feels. As soon as I walked into my first session, I felt relief. The therapist I had been assigned with through the NHS was friendly and allowed me to take it at my own speed. We discussed how long the phobia had been a part of my life, how meal times and something called the '5 areas' cycle. I'll show you an example of one of the sheets I filled out back then, maybe someone who comes across this post could relate? 

This 5 areas cycle would apply to every single piece of food I would eat. Whether it was a safe food or not and I would put extra pressure on myself if it was home made from scratch as I was anxious I would be wasting food that my family spent money on to feed me. I would sit at the dinner table across from my family and be worried that they were judging my ability to eat the food they prepared for me. So with the help of my therapist, she suggested I try separating myself from my family during meal times. Not because I didn't enjoy being around them, but to give myself a brain break from the pressure I put on myself to 'perform.' 

A few sessions and months later, after my therapist had been discussing with her superiors my situation so to speak. She had dealt with choking phobias before but not to the extent I had been experiencing my entire life and wanted to get more clarity on how to treat me better. The topic of ARFID came up. Looking at all the criteria together, it was clear to everyone and myself that I met most if not all of them. I had restricted my diet over the years to only certain safe foods to prevent the possibility of choking on them and I hadn't been even aware they were called that, I avoided going out socially for meals with family and friends because I felt embarrassed explaining about my eating issues and I didn't want to burden them with it so I would decline any invites. I was and am still very underweight. I would get anxious at even the thought of any and all food, especially if I wasn't sure it would be able to be chewed. I don't want to sound cliché but it finally felt like things started to make sense. I know for some people giving something like this a label or a name doesn't help, but for me it did. Please note even though I'm talking in past tense in some parts of this post that all these things STILL affect me. I still am very anxious towards trying new foods but I have coping strategies with the help of my treatment that make it a tiny bit easier to expose the idea of trying them. I still worry about choking, I still get sensory overload if there are family meals and even though I've lessened the amount I spit food out because I'm more aware of what I can manage.. there are many days I still have to do it.

Now the things I've written here were just the start of my journey and I wanted to give you a glimpse into how I became aware that I have ARFID and to introduce myself to you. From this point onwards I will be sharing many blog posts about other parts of my treatment, various safe foods and non safe foods. I want to share the moments I try new foods and expose myself to things I didn't think I could eat or think about eating before. I want to share more of my journey and how I view food as someone who used to be considered a 'picky/difficult eater.' How I've improved in areas I never thought I could imagine. But I also want to share more of me than just my ARFID. I want to share my love for photography, video games, books, writing and so much more! I want this blog to be somewhere I can be myself and be proud of who I am and who I'm continuously growing into. And I hope along the way, whoever reads this or comes along the journey with me feels that this is a safe space that they too can share their experiences in the comments whether it's their own journey with ARFID or a loved ones. Or even the non-ARFID posts where I will be sharing.

I thank those who stuck through reading this introduction of myself and I look forward to wherever this may go! Feel free to share any thoughts you may have! Have a wonderful day.