Do I have a right to recovery?
Lucy has worked for Mind for a year and a half. She is happiest outside, regardless of the weather. She talks about how not ever having a diagnosis has impacted on her recovery.
When I look back to try and work out when things started to change, I struggle to see the difference between myself and any other 12 year old. I worried about what people at my school thought of me, I wanted to fit in, I wanted to do well.
But I always worried a lot and my mood dropped frequently, making me feel frustrated and hopeless.
And I found a way to deal with that through restricting my food. I became obsessed with categorising what I would and wouldn't allow myself to eat.
Though I thought I’d found a secret solution, I can't have been that subtle. Soon my teacher had words with me. Eager not to disappoint anyone, but desperate not to lose control, I became more secretive and started to purge instead of restrict.
"My weight changed a lot but never seemed to concern anyone. As long as I didn’t need to see a doctor about it, I decided it can’t have been a problem."
Years passed. My checks and balances became second nature to me. I passed my A levels, got into university and moved to a new city. My life moved forward but I only ever felt in control if I adhered to my own rigid rules.
My day was decided by whether I made the ‘right’ breakfast choice in the morning. If I made one ‘wrong’ decision, my whole day felt ruined and I was consumed with trying to work out how I could make up for my mistakes.
By the time I was 19 I was exhausted. I never looked ‘ill’. When I read about eating disorders it was always girls with acute anorexia. Because that wasn’t me, I felt like my behaviour was just a bizarre quirk I’d made up. Ironically, it felt like I couldn’t even do self-destruction properly.
"Because no one swept in and told me I was harming myself, I thought maybe it wasn’t that much of a problem and it was my fault if I couldn’t deal with it."
I was so ashamed of my secret behaviour and I couldn't explain why I did it. I couldn’t explain why I hated myself so much.
Once or twice I broke down and told people around me some of what was happening. The words bingeing and purging felt too big to say out loud and they didn’t explain how hopeless I felt. I never felt like I could explain what I was doing so I never went to the doctor.
"To the outside world, I never stopped functioning."
I finished university, started working. I had no reason to pause though I desperately wanted someone to see how much turmoil I was in.
It felt like if I just wasn’t ill enough for someone to diagnose the problem then maybe I wasn’t really ill. I felt like a fraud and came down on myself harder.
Then, somehow, things changed.
I found myself in a healthy relationship and decided I didn’t want to drag someone else through this mess with me. It gave me a reason to think of myself and what I was doing differently. And so I starting researching.
I was on the Mind website, and noticed they referred to many of the things I had been experiencing, not just as symptoms of some distinct thing called an ‘eating disorder’ which a doctor needed to tell me I had, but as problems that people could struggle with at any shape, size, age or gender. And most importantly without any formal diagnosis.
"It was such a relief to realise my feelings could still be problematic, I was still allowed to be struggling, even without a diagnosis."
I felt validated and finally able to look for solutions, ways to help me cope, and feel better. There is no magic solution but gradually I've learned to identify my feelings more and deal with them, rather than find ways to punish myself or take my frustration out on myself.
But it's hard.
I still struggle to look after myself without becoming rule-bound. When I feel more anxious, being out of control of the ‘when’ or ‘where’ of things – not only food – can be a nightmare. Undoing years of rigid self-judgement is an ongoing process.
I'm much more active than I used to be and it’s made me much more able to process my emotions and made my relationship with my body much healthier.
But the voice that tells me I will be much less anxious after I go cycling is only a whisper away from the one that could tell me to go a little further, grasp a bit harder for control and start the endless calculations that once felt like ‘balance’.
Just as I still struggle to explain what happened, I don’t know how to describe where I am now.
"Calling it recovery doesn’t seem right. How do I have a right to recovery if I was never 'really' ill?"
It’s still hard to explain why some things are hard for me, or ask for the support I need, when I don’t have a name for my experiences.
I never quite understood what it was I went through. I kept it so secret that sometimes I even wonder whether it was real.
I am trying to accept that it doesn’t really matter what this thing is called any more. Instead of working out whether I have a claim to recovery, I’m trying not to oversimplify what is just complicated.
I’m trying to give space to all the uncertainty I avoided by creating rules about how I lived.
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