It was never about the food: Understanding me and my diagnosis of Binge Eating Disorder

By Monica Catherine

It’s the early 1990s, and I’m a small child sat in front of a table of “nibblies”. The setting: my nanna’s home. The scene: Christmas afternoon. Around me lots of adults talking; having inscrutable, adult exchanges. My little palms are sweating. Nanna is shooting my dad sharp, judgmental looks. Her eyes sometimes soften, but sometimes harden like steel, and I can never predict which mood I will find her in.

The hard eyes tell me I disappoint her. Dad begins to nudge me to “say something” to some old wrinkly lady who is hovering over me with a grin that is far too wide. I can’t. It’s as if all the muscles in my throat and mouth have collapsed, and my mind is blank, and there’s a burning feeling. I know Dad will yell at me on the way home, again. The moment passes, and Dad is occupied with something else. I move myself into the table and I eat as much as I can, as inconspicuously as I can.

Growing up was tense. While the adults in my world loved me and wanted the best for me, they were also unpredictable and inconsistent. In particular, my Dad and his mother (Nanna) carried big unresolved trauma that played out in emotionally unloving and sometimes scary ways towards me. There were big complex adult dynamics at play as my only sister was diagnosed with an intellectual disability just as I was entering the world.

Her care needs were far more intense than your average child, and my parents were overburdened. Their marriage was crumbling under the pressure. On top of that, there was conflict between my Nanna and my mother. While the heart of the conflict had nothing to do with me, the arguments themselves often took the form of “concerns about my social development”. This is why I was often severely reprimanded for not speaking in front of my Nanna.

As a child, I was particularly vulnerable to all the stress in my world. I believe I was born with a highly sensitive temperament. This means I feels emotions more intensely, among other things. High sensitivity is not necessarily a bad thing, especially when it is nurtured in children. Unfortunately for me, my caregivers were not able to meet my emotional needs consistently enough.

My guess is the combination of a (sensitive) nature and (inconsistent) nurture gave way to my lifetime of mental health challenges. This is why I also believe this mental health journey began with selective mutism at age 4 or 5. Selective mutism is a form of childhood anxiety. In the early 90s, children weren’t often perceived as having complex inner worlds and mental health needs, so none of this was ever investigated by health professionals at the time. Without help or support, eating too much under the radar of my caregivers became one of my first coping mechanisms for inner turmoil.

More than twenty years later, I received a diagnosis of Binge Eating Disorder (BED): this means I regularly eat a large amount of food, by most people’s standards, really quickly and in secret. Unlike Bulimia Nervosa, there is no “compensatory behaviour” such as purging. As a result, my weight fluctuated and rose over the years. For most of my life, the weight gain from this behavior was viewed through a narrow and misinformed ‘physical health’ lens.

I was told to eat healthy and exercise. I can’t count the amount of times I’ve been given this advice unsolicited and out of context. I would visit the GP for a sore throat and be put on the scales and given a referral for a dietitian (true story). There was always this sense that if I could only choose better and less food, I would get “healthy”. When I finally heard that I might have an eating disorder, I was surprised and not surprised.

The problem, of course, was that it was never about the food and I knew this. However, these problems had been framed back to me, by health professionals and the media and family and friends, as problems around food choices. For this reason, it took me a further two years to accept my diagnosis.

My story has been one where the people in my life see me and they don’t see me. As a child, certain behaviours were magnified in the eyes of my caregivers and aggressively targeted before they were ever understood. As an adult, my larger size is what’s visible and what’s targeted, again aggressively, with rarely an attempt at understanding. Eating does not happen in isolation of everything else going on in a person’s life and mind.

Recovery

This story began to change when I first started reading information on the Butterfly Foundation website, I then sought out informed, empathetic health providers and I finally gained access to treatment. My advice for anyone seeking treatment is to really take time and care to find your team. An important step in my process to seeking treating was the search for an eating disorders-informed general practitioner (GP).

In 2019, the Eating Disorders Mental Health Care Plan (ED-MCHP) became a Medicare item that allowed for subsidized psychological treatment with a GP referral. I approached psychologists with expertise in the area of eating disorders and asked which doctors most often referred their patients under this scheme. That’s how I found my current GP, who is immensely supportive and has given great information.

A good GP can help you find the right psychiatrist, psychologist and dietician for your journey.  I look forward to the day when more healthcare professionals are sufficiently educated on this area.

It has not been easy journey. I am still navigating a healthcare system and culture that sees size in isolation from the person and their life. This year I was honoured to join the Butterfly Lived Experience Insights Committee to begin my efforts to change that at a larger systemic level.

My message is “it’s not about the food”, it’s about the need that food is trying to fill. For me, food filled my need for comfort and understanding, and my journey now is to find other ways to meet my needs.

Advocacy work and writing helps me address my need for justice. Building a ‘safe space’ in my room with careful attention to lighting, sound and textures helps me to address my need for comfort and rest when the ‘fight’ gets too much. I am learning to build healthy and fulfilling relationships and hope one day I can feel less alone in my feelings. For now, it is about giving myself compassion and understanding in the absence of receiving it from other people. These are all ways I am working to recover from my eating disorder.

Get support

Butterfly’s National Helpline is available for individuals experiencing an eating disorder or body image concern, and their loved ones and friends who may be impacted or caring for the individual: 1800 33 4673, via webchat or email support@butterfly.org.au