Why Eating Disorder recovery scares me..

*potential trigger warning* mention of ED behaviours

Please do not read if you are feeling particularly vulnerable, or if you feel like you need support following this post please see Beat's website ; https://www.beateatingdisorders.org.uk/

I have never been good at making decisions, or rather making decisions causes me so much stress and worry that I frequently try to avoid making decisions myself. The reason for this is because, due to being autistic, I find it very hard to predict the future or predict the impact or consequences of choices. I also struggle to identify my own emotions. In order to make a decision you must first be able to predict the consequences of each option, assign an emotional value to each option and then choose the option with the least negative consequences and greatest emotional value. I often cannot do this, and I become paralysed by choice.

But, in recent days I have started to become aware that although there may be multiple layers of choice in my current situation, the fundamental underpinning is simpler;

Do I recover, or do I continue to let my ED kill me?

I have been completely paralysed and unable to even consider this choice because my mind has been manipulated and corrupted by my illness. I had no way of stepping away from anorexia in order to look at this choice at the core of everything in my life at the moment.

It has been 7 years since I started to use food and exercise as a way of coping. Even times in which others would have considered me ‘well’ I still had a very unhealthy relationship with food. Each time I’ve exclaimed that I’m “committed to recovery” I have known in my heart anorexia would creep back in. And so, I must ask myself why I am so scared of recovering from my eating disorder. I have given this some thought and have arrived and a few ideas;

Firstly, from the very beginning my eating disorder has been about controlling my other illnesses and difficulties. There is no denying that through immersing myself in anorexia I can manage my anxiety, self-harm urges, suicidal urges, sensory processing difficulties, among other things, much more successfully. In a way I feel safer and more stable when controlling food and over-exercising.

I’m absolutely terrified that if I recover from my eating disorder the chaos of my other illnesses and difficulties will get too much. I won’t feel safe, and ultimately, I don’t trust the mental health system to keep me safe when I can’t keep myself safe.

Another barrier standing between recovery and I is the sense of achievement I get from counting calories and watching the numbers drop on the scales. I am good at starving myself. I am a competitive and high achieving person. I am a hardcore perfectionist. I get so much reward from setting myself goals and putting hard work and dedication into reaching those goals. This is how I have achieved everything else in my life. To choose to recover fells like giving up on those goals set by anorexia which in my disordered mind makes me a failure. Something which genuinely makes me feel nauseated to think about. But in thinking about this, wouldn’t failing at anorexia mean being successful at life? This concept may take me a while to get my head around because, as I mentioned previously, I have spent 7 years brainwashed by anorexia, and this issue plays into my own personality traits as well as my illness.

The third reason recovery scares me is down to identity. Who am I if I’m not anorexic, or the girl with mental illness? I became unwell during my teenage years, the years in which people are supposed to figure out who they are as people and explore their place in the world. My world revolved around the throws of mental illness, people worrying about me, hospital appointments, A+E, inpatient stays, medication, psychiatric diagnoses, etc. of course it was going to affect how I saw myself, and how I formed my identity. Even through the public speaking and campaigning I’m reinforcing that part of my identity.

To make this issue even more complex, growing up with undiagnosed autism meant I had to develop methods to hide and mask, part of this was to absorb personality traits and identities from other people. To this day, even with better self-awareness of my autism, I can almost completely change my personality depending on who I am with. I have never had the opportunity to truly develop my own sense of self, instead I inadvertently took my diagnoses as guidelines for who I am as a person. To actively move away from those diagnoses, I am effectively turning away from the only thing I have akin to identity.

Previous ‘recovery’ experience has also instilled a sense of fear around recovery for me, in previous ‘recovery’ attempts I have jumped straight from a very restricted and narrow diet to a full recovery or refeeding diet. As someone who struggles with change I’m not surprised anorexia clawed its way back in. The shock psychologically and physically was suffocating. Thinking about it makes my chest tighten and my heart race. The sudden changes in my physical appearance, the extreme hunger, bloating, water retention, all scare me. I have always done it on my own as well, because I have refused to let family and friends help in fear of being a burden, and because mental health services have never supported me appropriately. I cannot bare the thought of going through it again by myself. Each ‘recovery’ attempt has also seen me watch the number on the scale jump upwards, with each gain in kilograms there was a gain in self-hatred. Each ‘recovery’ attempt has resulted in anorexia returning with vengeance, each relapse has been increasingly extreme. This has taught me that ‘recovery is futile’, and I find myself asking, “what is the point if I’m just going to get ill again?”. But as I look back I’m not sure I can say that these attempts were honest and committed recovery attempts.

The last thing I can think of that stands between recovery and I is the idea of ‘recovery as reward’. This ties into my point about setting goals and being a high achiever. I can hear anorexia informing me now that I can only recover when I reach x-kgs, or when I can see a certain bone, or when I can wrap my hands around my thighs. I continually chase permission to recover. Unfortunately, I seek that permission from the one thing that’ll never give it. Instead anorexia keeps moving the goal posts, once I reached x-kgs and wrapped my hands around my thigh, I wasn’t allowed to recover because the next goal had been set by anorexia. My feeble protests were met with the response “you’re not sick enough to recover” or even “there’s nothing wrong with you, how can you ‘recover’ if there’s nothing wrong”. I just keep limping to the next false finish line, I can’t seem to call foul play and stop chasing the goal posts.

I can recognise that in being able to identify some of the reasons why I have not yet committed fully to recovery from my eating disorder I am giving myself the awareness to begin to overcome these fears and ultimately recover. I have realised that I am doing what I often do when I need to make a decision; wait for something or someone else to make the decision for me. But maybe I need to accept that this is on me and me alone. Nothing or no one can make this decision for me. There won’t ever be a lightbulb moment that will suddenly thrust me onto the recovery path. I won’t ever reach anorexia’s goal posts, in fact I will die before I even come close to meeting anorexia’s demands.

I am not writing this as a ‘look at me making life altering decisions’ piece, this is simply me acknowledging a small but vital bit of learning.

Please seek help and information if you feel vulnerable after reading this, or if you are worried about your own or someone else's relationship with food. I recommend Beat's website; https://www.beateatingdisorders.org.uk/