I have always said that my eating disorder felt secondary to something else. That control of food was a bit like a pressure valve – a way of releasing, of expressing struggles but NOT the core problem. Food was a symptom of something bigger. For years, certainly through my first hospital admission and for years of therapy following, I couldn’t put a name to this “something”. I knew ‘Eating Disorder’ wasn’t enough but trying to explain this to a system that likes to categorise, to channel down narrow treatment pathways and to latch on to simplified labels was not easy. I don’t blame the system – it was even difficult to understand within my own construction of a sense of self. I’ve always been someone who likes black and white. A perfectionist. I actually quite like a box to fit in. It’s convenient and neat to have the eating disorder label.
The thing is, I don’t just like a metaphorical box… I literally like a physical one. The world has often felt too big. I’m sensitive to noise; overwhelmed by bright lights and colours; and find it impossible to function if there’s too much movement around me. Hence a box to climb into, a duvet to cocoon in, ear protectors, darkness, my own space are all appealing. Perhaps there’s something else going on…
An eating disorder can provide a metaphorical box. I’m so fixated on food that all other senses are muffled. I’ve climbed into my box and shut the lid. For years I didn’t understand it but it was the only way I had of dialling down the world. I wanted to recover from my eating disorder but how could I go on living without my box?
The answer comes from adding another label. Looking less at the visible manifestation, the physical symptom, and instead unpicking a cause. For me, this was autism. I wish I’d known from those earliest seeds of my eating disorder’s development that there are other ways of constructing your box’s walls – less self-destructive and harmful ones. I can dial down the world by wearing things such as loop headphones to reduce volume; there’s quiet shopping times offered in certain shops where the ambience is calmer; I access neurodivergent waiting rooms at train stations; getting a disability card allows me to access some places without cramming in to noisy, busy queues; I can use a weighted blanket; it is okay to sometimes say “no” to parties or activities that overwhelm me; it’s okay to need a routine and structure to each day… All these work in much the same way as starvation. The world no longer feels so overwhelming, such a bombardment.
With autism at the fore, there’s also different ways of managing and doing therapy that help me to engage fully, and to make the most of the help offered. It’s not that I wasn’t trying to engage before but, for example, I find it hard to know how I feel. I can’t talk about emotions as they are locked away from me. Using objects of reference and emotion word cards has helped me access therapy and better understand myself. Thus I give myself the best chance of recovering from my eating disorder.
A diagnosis of autism rather than imposing limits and reducing me to something lesser allows me to be bigger and better. It doesn’t impose limits but opens possibilities. Never mind ‘a room of one’s own from which to write’; this girl with autism needs a box of her own from which to exist and from which to write her full and active life.
I wish I’d known from the beginning how to construct a box in healthier ways.
I wish I’d had the tools.