Why I'm speaking openly about my experience with an eating disorder

Warning: This story discusses mental health and eating disorders.

As recently as two years ago there were meals that stopped me in my tracks.

When I visited my family, I made them hide the bathroom scales for fear the number it revealed would send me into a tailspin. Now I recognise that no inanimate object should hold that much power.

I'd spent my life trying to hide from a culture that tells me to be small, in every possible iteration of the word.

For most of my 20s I experienced an often-stigmatised mental illness, anorexia nervosa. Something about this label has given me pause for years now and that something is shame.

This week is Body Image and Eating Disorders Awareness Week (BIEDAW) and this is my story. In sharing, I openly acknowledge that my story is just one of many, and that anorexia nervosa diagnosis represents only 3 per cent of the approximately one million Australians who are currently living with an eating disorder.

I hope that by speaking up, others can be empowered to also talk openly about their own experiences and find support.

Opening up to my parents, then everyone else

For many years I experienced white-knuckle, heart-in-my-throat levels of anxiety at the thought of sharing that I lived with an eating disorder.

Telling my parents was one of the hardest things I had to do because it meant admitting I'd been hiding from them in a world of lies, half-truths and shame.

Perhaps, had I not been so overwhelmed battling my own mind, I might have realised at the time that my disclosure was met with acceptance, support, and a distinct lack of judgement.

I was fortunate to have such reliable support, with loved ones who didn't assume my eating disorder was a choice, or a personal failing.

Sharing with my family also meant that I had to face recovery. In that period, I would cry over meals then cry more over weigh-ins as my weight crept upward.

Most difficult of all, I had to question internalised biases and recognise that this disease that manifested itself physically, was in fact a serious mental illness.

I struggled immensely opening up to anyone to reveal the inner world of pain and fear I had been battling and trying so hard to hide. So, you can only imagine my anxiety four years ago when I decided to share my story outside my immediate circle.

When I finally posted about my eating disorder on social media, just before my 26th birthday, some called me brave and courageous.

In truth I was terrified, but I was also fed up (so to speak). Up until that moment, I'd been putting all my energy into taking up as little space as possible, trying to hide from a world that felt overwhelming. I simply couldn't sustain this mental and physical battle any longer.

It had been about control.

For years I could not explain or understand how my eating disorder began, not even to myself.

But for all the things I hated about it, it did help me feel in control (hint: I wasn't). I engaged in unhealthy and ultimately unsustainable behaviours in an attempt to control my food intake and weight, and painstakingly hid my behaviours from others.

In retrospect, I realise that controlling food allowed me to avoid focusing on all the things in life that felt out of control.

During these years I faced obstacles such as diagnosis with a rare genetic disorder, the stress of leaving university for health reasons and moving back to my hometown of Wagga Wagga, plus the social isolation that followed.

Compounding my eating disorder were diagnoses of generalised anxiety disorder (GAD) and intermittent psychosis and although I would not be diagnosed until 2019, I came to realise that I was also autistic.

Reaching recovery

Eventually, my eating disorder ended up causing more pain than I could hide, and it became too hard to keep lying to the people I loved.

Now at 30, I no longer find myself fighting the voices that shouted the loudest (among the fray of mental illness) telling me that food was my enemy. I have silenced them with a determination to speak out as loudly as possible.

I carry the belief that the most dangerous conversations when it comes to mental illnesses, especially eating disorders, are the ones we choose not to have at all.

As for how I reached recovery, first I had to realise that I deserved to take up space in the world. Time was key. As was the willingness to do the hard work of mentally recalibrating, until I was able to relinquish control.

And that is the beautiful paradox of recovery — now, finally, I really am in control, not an eating disorder.

Jessica Horner is an ABC Regional Storyteller Scholarship recipient, a partnership initiative with International Day of People with Disability.