This post comes with a trigger warning due to the sensitive nature of the content described below. Please read with caution.
Not everyone with an eating disorder has a preoccupation with being thin, or desires to lose weight. How do I know? Because I didn’t.
This doesn’t mean that my eating disorder was any less valid than a more ‘typical’ diagnosis. It wasn’t any less severe, easier, or less painful. But it did mean that it was a lot harder to spot because I fit into a category called ‘OFSED’ – Eating Disorder Not Otherwise Specified.
The misconception that everyone with an eating disorder wants to lose weight is sadly too common, perpetuated by stereotypes, but also very dangerous. When I went to the GP to seek an ‘eating disorder’ diagnosis, there were several questions relating to the desire to lose weight, being uncomfortable with your current weight, or engaging in behaviours in order to lose weight. For me, none of these rang true, so I didn’t tick those boxes on that questionnaire, so I wasn’t diagnosed for a long, long time after I should’ve been. I was marched to the GP several times by my Mum, who exasperatedly expressed her concern and desire for me to get help, but this fell on deaf ears as I didn’t have body image issues. My fear was literally of food, not of weight gain.
I bet you’re wondering – why would someone develop an eating disorder if they don’t want to lose weight? For me, the simple answer was control. I was diagnosed with 2 chronic illnesses aged 16, and my life fell apart. I went from being a happy, active, outgoing teenager, getting grade A’s in school and an overflowing social calendar, to being crippled by pain and fatigue, bedbound, and relying on my mum to be my full time carer, all within a matter of months. I felt so helpless, powerless, and like I had no say in the direction of my own life. I felt betrayed by my body for making me ill. Life felt scary, uncertain and unpredictable. I couldn’t control my illness or what was happening to me. I felt so….lost. I was on incredibly long waiting lists under different NHS Trusts, and I came to the realisation that no one was going to make me better. I felt like I had to take action and start to do something myself.
I did lots of research online, and there were several sites suggesting ‘healing’ diets which claimed to cure my illness. I thought through controlling my food, I could make myself better. I could magically cure my illnesses through diet. Endless blogs, websites, videos and other media content had all these ‘healing’ diets which in my desperate vulnerable state, brainwashed me. I felt like that was my way out of illness, that was my answer and my ticket to health. If only I could follow these diets, I would get better. I could finally have control back over my body, over my illnesses, over my life. But suffice to say, this didn’t happen. And with each failed diet, I went in an even more desperate search of a new one, but still keeping the rules of the old ones, so in time I ended up with a shorter and shorter list of foods I would eat, and a longer and longer list of food ‘rules’ that had to be adhered too. Not just by me, but by my whole family. The need for control spread from food, and seeped into my personality. Controlling my families food was no longer enough, I felt the need to control everything else they did. I had become a manipulative, control freak.
With this came a very malnourished state and brain, plummeting me into being incredibly pre-occupied by food, obsessive about calories and numbers and tracking nutrients. My anxiety around food soared, so crippled by the thought of a ‘forbidden’ ingredient ending up inside my body that it caused intense panic attacks, tears, arguments, hopelessness and despair. I was totally exhausted as fulfilling all my food rules from these combinations of different diets became almost a full time job, I felt like I was constantly failing so my self-worth was non-existent, and I was in a total black hole of depression dictated by my hopelessness around food. I couldn’t sleep, I couldn’t socialise, I couldn’t have a conversation that didn’t revolve around food; my whole life was eating disorder. Yet still, when I went to my GP she refused to diagnose me with an eating disorder because I didn’t meet the criteria of anorexia or bulimia.
Eventually, I got to a critical state where I was forced into hospital due to being so physically and mentally fragile. It was only when I was assessed in hospital that I finally got diagnosed and got help. But it never should’ve come to 4 years of struggling in silence in order for my experience to finally be diagnosed. But finally, I could be on the road to recovering. An OSFED diagnosis didn’t mean that recovery – learning to eat again, learning to manage my anxiety and depression, learning to build a healthy relationship with food, learning to trust my body, increase my confidence, and repair my self-worth and self-esteem – was any easier. It was just different, and I needed an individual focus instead of group support.
Fortunately, OSFED is becoming more well recognised, resulting in earlier interventions. Eating disorders are just that – EATING disorders. Its such a broad term – but if you’re relationship or attitude towards food is affected, then it counts. Its valid. You don’t need every single symptom on the list. You don’t need to fit into the stereotypical view of an eating disorder. You don’t need to question yourself, think that you’re not sick enough, nor do you need to ‘invent’ symptoms or pretend that you do have body image issues in order to get help. Yes, some eating disorders do involve high amounts of exercise, plates of salad and a preoccupation with being thin. But some don’t. You might have some of the main symptoms, you might have different versions of them – but its YOUR eating disorder and YOUR mind. It developed for a reason, even if it wasn’t about your body or appearance.
That doesn’t mean its not an eating disorder, and it doesn’t mean its not valid. You are important, you need to be heard, and more importantly, you deserve help, regardless of how many boxes you tick, or what diagnosis you’re given.
For more information about eating disorders please check out:
For more information regarding OSFED please check out: https://www.beateatingdisorders.org.uk/types/osfed
