This week has been Eating Disorder Awareness Week. Beat have chosen to shine a spotlight on Avoidant Restrictive Food Intake Disorder (ARFID). ARFID is not a rare disorder despite the lack of awareness and treatment available. It's not picky eating, fussy eating or a phase and is not just a disorder for children. In terms of ARFID recovery may look different than other eating disorders, we must definite what ARFID recovery means for ourselves especially when neurodivergence is involved. It's just as serious as other eating disorders and needs to be talked about and understood.
Thank you to Hope Virgo for all the work you do and for sharing my story on your platform. I wanted to share it here on my blog as well :)
ARFID can have serious consequences for health if left untreated. Treatment is not available nationwide and there is little support especially for adults.
ARFID is not a choice, it's not fussy eating or being picky- it is a serious eating disorder that impacts our whole lives. An unrelenting battle we have to face multiple times a day with no end in sight due to the lack of recognition and access to support. Told about the damage we are causing ourselves, but we know the damage yet when I have reached out I have faced judgement, stigma, belittling and ultimately neglect.
The fight is a long way from being won but through lived experience, activism, and campaigning we can make a difference 🫶🫶
Read story below:
Hello my name is Hannah and I am 23 years old and have struggled with what I now know is ARFID my whole life.
My path to this point in my life has been a difficult one, I grew up undiagnosed neurodivergent (I am autistic with a PDA profile and ADHD). I have always been labelled an incredibly fussy eater alongside this I struggled with severe separation anxiety and just did not fit in the mainstream system however being female, no one picked up on the struggles I worked so perfectly to hide. I also suffered abuse in my childhood and had a number of other traumatic events. My brain did not learn or work in the same way as my peers, I couldn’t really make friends and the very few I bumbled alongside never lasted very long. At 9 years old I developed what would be labelled a stereotypical eating disorder and began having suicidal thoughts. At this point I so desperately wanted to disappear and be small. At this point my eating disorder resembled what others could identify with. I was referred to CAMHS in my teenage years and ended up hospitalised at 16. I also suffered with severe gastro problems for as long as I could remember, I had pain, bowel issues, sickness, nausea and fatigue. At 16 I was diagnosed with coeliac disease. My diet was further restricted but also the connotation of pain when eating was strengthened.
I struggled to fit in and understand the world- I felt I was not given the handbook everyone else had to society and the rules to exist. I thought I was broken, damaged and fundamentally not good enough. I had been anxious my whole life and just after my GCSE exams it all crumbled around me. Not only did I feel this in relation to life but also in terms of my eating disorder. Everyone I came into contact with had anorexia and in a bizarre way I felt like a fraud. I couldn’t relate to the same thoughts and feelings they expressed and being inpatient meant I was constantly feeling like I couldn’t even ‘succeed’ at an eating disorder.
I then spent the next 4/5 years in and out of hospitals. I ended up in PICU (Psychiatric Intensive Care Unit) on constant observations (when someone has to be with you at all times) due to the level of distress I was in- I was a revolving door patient, labelled difficult and too complex. I was told there was no hope and I would never change. My eating disorder was pretty much swept under that carpet- as I didn’t fit into the neat box expected by services so my case was pretty much ignored.
At 19 years old I was told I was autistic. Of course, this wasn’t an overnight transformation but slowly over the next few years I educated myself, I learnt about autism, neurodivergence and I went on a journey of self-discovery. I did this through different forms of creativity. I began to use this as a way to express myself, a way to get lost, away from the noises of my own head. I used it to understand and investigate what neurodivergence meant to me. It allowed me to work through my own internalised ableism, my fear of being different and to cope with the constant discrimination and poor treatment by others. Unfortunately, during my time in hospitals, I suffered significant abuse which led to even more complex trauma and deep issues with trust. During my hospital stays I was subjected to neglect, abuse and mistreatment- this combined with my childhood trauma has resulted in C-PTSD. This is especially true in relation to my eating. This trauma added to my eating difficulties- I also suffered with and continue to suffer with a lot of gastrointestinal issues. The physical pain of eating and fear of this compounded the issue. I spent weeks in hospital being gaslighted by doctors, in pain and scared. This further added to my inability to eat.
In my area adult eating disorder services only see patients with anorexia and only those at a particularly low BMI. I have been referred and rejected more time than I care to count. I have so many negative experiences with that service that now I have so much fear and trauma that I wouldn’t be able to engage even if I wanted to. I wish I could share that not only have I found support but that my situation is better however sadly this is not the case. Just the other week after collapsing three times in one week I attended A&E with a logged heart rate of 200 beats per minute and the doctor asked me why I had come, he told me that I knew what was wrong with me, that I knew the answer- just eat and drink more. When my mum and I calmly explained that it actually wasn’t ‘that easy’ and that I had suffered with this for at least 14 years, he turned around and told me that in that case there was still no point as I would never get better and I just had to learn to live with it- I was chronic. I then attended my GP whose only option was to try and refer to the dieticians even though I have been under them so many times and there is nothing they can offer. My old mental health team again prescribed me fortisips and again I have those in my fridge for when I can. It makes me angry, frustrated and sad that this is the ‘treatment’ offered for eating disorders in this country. There are two very good charities in my area but unfortunately as someone who has suffered for so long, got a history of suicide and is also autistic I don’t qualify for their support. While my mental health in other areas has improved massively- thanks to my own hard work and determination, my ARFID has remained very much stagnant.
However, this is not the end of my story. My journey through life so far has been one of many trials and tribulations. But through my journey I found my calling in creativity and social change. it has been the tool I have used to discover the real me, navigate my challenges and now my weapon of choice in the battle for social change and justice. I will never stop shouting about the need for proper support for everyone with an eating disorder. I will continue to advocate for myself and others with ARFID. Nothing will change unless we keep at it. It’s not easy, there are plenty of knockbacks but that is why resilience is key. I have had to be resilient my whole life and when fighting for change resilience is everything. Speaking up and being the voice for change is vulnerable and opens you to pain and suffering. But it also is so empowering and when you make even a small change, it is all worth it. I have been lucky enough to work with a number of charities as well as having my blogs published on Young Minds and The Mighty Creatives. I also have my own blog, which I am trying to grow alongside my social media. Yes, my story isn’t one of recovery but it is one of never giving up. I am determined to be a part of the change and the dump scales movement- by sharing my story I hope that is helps in the fight for better.
Lots of love
Hannah xx
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