Molly … How it feels to have an Eating Disorder
… well, it’s complicated…
Confusing
Isolating
And also… safe?
Divided …
...to Coalesce
How does it feel to have an ED
Isolating. Confusing. Loud and beyond my control.
… It’s different for everybody but the sense of noise and chaos and loudness you’ve just heard comes up again and again.
For me, there’s a lot of emotions and feelings and thoughts all muddled up into the label of ED. In many ways it’s a simple statement and yet to say “I have an Eating Disorder” has not come easily. The words get stuck. I think this is because ‘Eating Disorder’ seems to place the emphasis in the wrong place. It describes one aspect of my behaviour but is frustratingly reductive. From the outside it may look like my difficulties are with eating but that’s never been how it feels. My struggles around food feel like a symptom – the outward, visible manifestation – and not the core of my difficulty.
Verbalising ‘how it feels’ is hard – it’s too tangled, complicated and knotty to fit neatly into language so I’ve tried a more creative approach: allowing complexity rather than wrestling for satisfying, though artificial, order.
So, an ED - It feels Confusing
It feels like my head is mis-wired. Like my brain’s pleasure centre is somehow no longer plugged in to the pleasurable activities. Instead, the things I used to enjoy now plug into fear and guilt and drive anxiety. Things that used to be upsetting – pain, discomfort, hurt – feel soothing and safe. There’s a confusing tangle inside my head. I’m all back-to-front.
An ED feels Isolating
It feels as if my body has been severed from my brain. It’s like my core, my central nervous system (inner world, control centre, decision maker), has been disconnected from the periphery – the physical body that touches and experiences the world. The colour, vibrancy and sensation of the world, like the multicoloured thread dancing through this piece of fabric, reach no further than periphery. They don’t make it through to the central processor. My core stays monochrome, logical. And this separation, of body from head, feels lonely. I don’t understand the world around me or my place in it.
But, sometimes, It also feels ‘Safe’…?
I’m dialling down the world enough to make it manageable. When all the sensations and feelings and experiences of the world come at me too quickly to process and too intensely my fuses blow! Self-harm – A new bruise, a scar – is a trace of each little explosion. Or, I can dial down the volume of the world with a shield of hunger. Anxiety? Depression? Self-harm? Autism? Eating Disorder? … Every individual is a mass of co-morbidities and overlap.
…There’s a lot going on behind the ‘abnormal’ eating. … Far more complicated than the ‘Eating Disorder’ branded onto it.
So, perhaps we need more – more labels, more tags, more specialists?...
… … But, this can result in a divided self. That’s how it feels. Receiving multiple diagnoses can feel a bit like adding another label to a new jar. It’s not unhelpful but it can shut down avenues and conversations. I’m not made up of separate systems easily divisible into medicine’s framework. I don’t have localised anxiety in my foot and depression in my left arm, an eating disorder in my stomach…
My experience is one of interactions not divisions. The actions/words/opinions of each care team generate ripples that modify and muddle in together. We can’t just add another jar, another specialist care team, because the, for example, depression changes the ED and the ED interacts with the depression. It’s hard to find an identity or resolution within a division-driven system. It feels like I’m disjointed, and so, my experience is one of confusion. It’s frustrating trying to fit myself into a collection of jars!
Individual person-centered approach
I am an individual
I am Molly
Thank you