This text includes references to and descriptions of eating disorders and disordered behaviour.
For most of my life, I have never really felt truly empowered.
From a very young age, I knew that I was “wrong”. Whether it be doctors, my family, or my peers – there was always something to be said about my body and my appearance that cemented early on in my mind that I needed to fix it. Thus began a lifelong dive into crash diets, restriction, bingeing, and a never-ending fear of food. Internally, I took on the negative voices I was hearing all around me until I could no longer distinguish between them and me. I became my biggest critic, my cruellest bully, and a harsh judge – handing down sentences to myself that were impossible to fulfil. Then, in 2020, something happened to change my trajectory. It was such a small thing to begin with but, like a snowball rolling down a hill, it picked up speed becoming bigger and bigger until it changed my life. Like a lot of us did during the pandemic-induced lockdowns, I was spending my time doom scrolling through social media feeds and I saw a sponsored post for “Beat” – a charity that supports people with eating disorders. To this day, I’m not sure what compelled me to click through and read more – I had never considered the possibility that I had an eating disorder, I had always been assured that someone fat could not have one, but nonetheless click through I did.
That is how I learnt about Binge-Eating Disorder (BED). A mental health condition. An eating disorder. And finally, a way of understanding myself. When I first read about BED, I felt frozen in my seat. It was like reading my life story. As someone who had conditioned themselves to keep their emotions in check, I knew by the tears running down my face that something big was happening. As I processed the information in front of me, the tears turned to anger. I couldn’t believe that for 24 years, I had been referred to dieticians, weight loss hypnosis, boot camps, and a million other programmes all focused on changing my outward appearance. No one had ever considered that my fluctuating, “problematic” weight could be caused by anything other than my own unwillingness to “just eat right”. That anger propelled me to do something I had never considered: ask my doctor for a referral to be assessed by an eating disorder specialist. My doctor was dumbfounded, and initially she tried to refer me to another dietician. But, for the first time in my life, I stood firm. I wasn’t going anywhere until I had a definitive answer to the questions that had been spiralling around my head since I had visited the Beat website.
I got my referral.
And after that, I got my answers and a diagnosis. It was official. I had been experiencing an eating disorder for the majority of my life. The first time I saw a poster asking for people to participate in the EmpowerED project was during my initial stint of therapy at an eating disorder centre. They were looking for people with lived experience to join a forum focused on making changes to eating disorder services in the North West. I thought it sounded interesting, but I was at the start of my journey and wasn’t sure I’d have anything to add. Well, it was that and the imposter syndrome that most people experiencing mental health difficulties have. So, I continued on with my counselling – learning about structured eating, triggers, disordered behaviour, and how to make changes that would allow me to start repairing my relationship with food. It was hard, unbelievably so, but I could feel rusty gears shifting in my brain – positive parts of my mind that had long sat dormant, starting to wake up. After completing the first therapy programme, I continued to use the techniques I had learnt in my day-to-day life to keep making changes. But, like so many of us, I started to struggle on my own. I knew I needed some more in-depth support to carry on, so I returned to my GP to ask for another referral.
She listened carefully to me, read through my notes and medical history, and told me she would re-refer me to the eating disorder centre that had previously treated me. 4 weeks later, I received a call from a weight loss clinic in Manchester asking me to book in my initial assessment. Confused, I asked them why they were calling. “You were referred by your GP, she told us that you were struggling with your weight and needed to lose some… is that correct?” I wasn’t sure how to respond. I felt those tentative positive parts of my brain start to crumble. I asked them if they worked with patients with eating disorders. There was silence at the other end of the phone, and then a “…no. That would be quite dangerous.” I agreed, and told them there had been a mistake with the referral.
I thought back to all the other times a medical professional had dismissed my needs, ignored the warning signs, and prioritised – above all else – what I looked like, what those numbers under “weight” on their screen told them about what I needed. I felt so tired. Even with a diagnosis, knowing that the NICE guidelines say treatment for a person with binge eating disorder should advise against trying to lose weight, I was still in the same position as before. Then I remembered the EmpowerED poster. And I thought to myself… I can’t be the only person in a bigger body who has experienced these problems. I know I can’t be, but I also know that we have been taught to keep that to ourselves – society has let us know that we’re solely responsible for our situations, so we’ve got to like it or lump it.
But I had reached my limit – I certainly didn’t like it, and I was no longer going to lump it. The same day I emailed my GP practice to call them out on their behaviour, I emailed the EmpowerED team. I wanted to join, I wanted to make a difference, I wanted my voice to be heard.
When I joined the first forum, I was equal parts terrified and excited. I had never done anything like that before, and I had no idea what would happen – anxious thoughts spiralled around my mind:
“What if you’re wrong?”
“What if you’ve got nothing productive to say?”
“Why would anyone be interested in what you’ve experienced?”
They were quickly shut down. The forum was so welcoming, so supportive, so accepting. We all had individual chats ahead of the group meeting, where we were able to talk about where we were on our recovery journeys, and what level of support we would need throughout the process.
Would an email check in before each session be enough, or would you like to speak to a member of staff before and after just to make sure you hadn’t been triggered by anything? Or talk through the trigger if you had? There was so much care and thought put into how taking part would impact on us. It was something I hadn’t even considered. I had falsely assumed we’d attend the group and that would be it. I realised I wasn’t really used to someone treating my eating disorder as valid, as something to be considered, and thinking that I deserved the adjustments they were going to make. If I had been unsure about taking part before then, this cemented firmly in my mind that I was definitely going to be a part of the project.
Over time, we have shared parts of our stories with each other and found common ground. There have been opportunities to make real change happen, and we’ve already heard about alterations to services that are taking place. All from this small group of people meeting once a month online and raising their voices up. I can see the change in the other participants already.
There’s an energy and a confidence that starts to shine through, even on those days when they’re struggling on a personal level. I can see that change reflected in me, too. Recovery is not linear – it’s a winding, twisting path that differs for each individual. But I feel like I can see a through line now. It’s slowly, but surely, going upwards. There are pits and troughs, but it’s getting easier to get back up after I’ve been knocked down. I stand a little taller, I try to disappear a little less. I’ve started to talk back when I feel something is wrong, no longer holding my silence out of fear.
EmpowerED has put the reins in my hands, it’s taught me that our stories and experiences are valid. More than valid, they have the ability to influence real change.