My eating disorder was a way to fit into the neurotypical world - Cerys' Story

Growing up, I was a happy, bubbly, and creative person who thrived in performing arts and learning. When I was 8 years old, my body and food became a big part of who I was. I found myself comparing everything about myself to others, from my grades to my clothes to my body. I started dancing when I was 4 years old, and performing became my whole world. I would spend weekend after weekend in a place where I could be myself. When I was 10, my world flipped on its head. I was forced to grow up and deal with my trauma and sadness alone. This was my default position as I worried about telling my parents, who were already trying to take care of my sister. At school, I was a hard-working student but struggled with my peers. I never fully understood why friendships were so hard for me or why I became so attached to certain people.

After many life changes and a lockdown, I found myself feeling more and more alone, not knowing how to cope. For years, I had struggled with disordered eating, but my body image deteriorated due to pressure from dance and feeling too exposed in my own body. It started as a control mechanism. I felt like my life was not in my control, and I didn’t understand how to deal with the unexpected. Food for me was a way to control something; it was a way for me to take charge and decide what I could control until I realised I was the one being controlled. My brain sent me spiralling into what I could and couldn’t eat, how much exercise I should do and whether or not I should meet with friends or avoid having to eat in front of them. In my brain, I was ‘fine’, I didn’t need help, I had it in control.

I never thought I had anorexia or even an eating disorder; I just believed I was messed up. I found comfort in the emptiness and the control, but I also felt depressed and anxious. My loneliness was still there, but my eating disorder thoughts kept me company. Simple tasks like waiting for dinner became an anxious build-up of stress, wondering if I should check if my dad was cooking it the way my brain wanted him to. The worst feeling I felt physically was the never-ending feeling of coldness. I could be wrapped in layers of clothing, but could not get warm. Yet I still believed I was ‘fine’.

A common misconception around eating disorders is that people who have one will weigh themselves often; this wasn’t the case. I never once looked at my weight on the scales, which left me looking in the mirror and ‘body checking’. Due to the body dysmorphia, I couldn’t see or tell if what I was looking at was real or fake.

You may be asking yourself why her parents didn’t do anything, and the answer is that they did. My dad took me to the doctor when he and my mum were worried. When I attended this doctor's appointment, they requested that I have blood tests. The GP reinforced that I was a healthy weight and nothing to worry about. What the doctor didn’t take into account was the mental battle I was facing. Every week, I would go to the GP and every week the GP would give an analogy of how he would ‘fix’ me and show me my weight. This was horrible for me as I became aware of my weight. Soon it became more clear to my parents and my sister how badly I was struggling, not just with meal time, but having a set routine every day.

My parents took me back to the GP, and this time they both completely flipped, begging for a referral to be made to an eating disorder clinic. My GP said that a referral would be made, but we continued to hear nothing. More and more, I disconnected from the world. My school at the time was a performing arts school, meaning two days a week, I danced all day. My school told me I wasn’t allowed to dance anymore, which broke me. I felt I lost a part of me, but it wasn’t enough to break the cycle I was in.

My referral was lost, but an emergency referral was made. Before I knew it, I was sitting at home being told over the phone by people I had never met that I was not to go to school. The day of my assessment, I felt incredibly anxious and angry. I was angry that I was having to go, and I was angry because I was in denial that anything was wrong. There it was, the diagnosis I deep down knew I had but didn’t expect ‘Anorexia Nervosa’. I laughed in the clinician's face in the room. My world came crashing down again, but this time I was being forced to stop having control.

Another part of anorexia people believe is the idea that everyone wants to just lose weight, for me, it wasn’t about the weight it was the control. The feeling that I had everything in my control and that nobody could take it from me. For the first time in years, I could escape from a world that was unexpected and uncontrollable to a little world in my head, which was safe and controllable. My anorexia led me down a deep hole into something dark, delusional and exhausting. At my paediatric appointment, I was told to go to the hospital. I laughed and cried at the nurse in the clinic, not believing what I could hear. She must be joking was all I thought, the hardest part of that examination was the look on my mother's face. The look of pain and shock all at once. In that moment, my mum must have felt like she failed, like she should have done more, like she should have stopped it.

Three words I would use to describe my hospital experience would be scary, painful and heart-breaking, not because of the people but because of the battle I was facing. More of the unexpected came my way, alongside more loss of control. There were so many strict rules - yes, these rules were to physically make me better, but mentally, this was like running through fire.

A part of recovery that threw me sideways was suddenly feeling all these emotions I had bottled up or been distracted/numbed from for ages; it was awful for me, but also for my family. I watched the world as they moved on, but I stayed battling over the same thing each day. My friends grew up and went out drinking and meeting up, growing closer and closer. Eating disorders are not all one-size-fits-all. My whole life, I was disordered in my eating, but my anorexia was labelled as a result of physical deterioration. I was ignored by health services until it was almost too late. I am lucky enough to have received help when I did, and most importantly, the determination and help from my parents and sister when they fought for me time and time again.

Being diagnosed with autism just before my 18th birthday was something I never expected. It all made sense: the need for order, control and structure. The struggles with friendships and school. What I realise now is that my eating disorder was a form of control that was a way for me to mask my feelings, mask my personality and try to fit into a neurotypical world. If I had known this at the time, the question I have is would my recovery of been able to been adjusted to suit my needs. Instead of sending me into meltdown and burnout?

If you need support for an eating disorder, for yourself or someone you love, contact our Helpline today.