Box 1 Lived experience perspectives: why we need this guideline

“In hindsight, I’ve lived with disordered eating since I was a child. It emerged following some traumatic experiences, but my eating disorder wasn’t first identified until I was 19 years old and presented at my General Practitioner [in the United Kingdom (UK)] for treatment for another mental illness. At that time, the eating disorder services in my area only accepted people with a low body mass index (BMI). Since moving to Australia at age 21, it's been a long journey of trying to access appropriate treatment, with periods where I've been well and managing, and several periods when I've relapsed. Currently, at age 32, I’d say I’m mostly well, but I still have periods where I binge, and others where I restrict ‘to compensate’, and food and eating remains something I’m hyper-vigilant about.

I feel very privileged to have been able to contribute to the development of this treatment guideline. For much of my recovery, I feel like I have been doing it alone, as I have struggled to access compassionate, equitable and effective treatment options for my eating disorder, as it presents in my higher weight body.

The most significant help I have received is access to high quality, trauma-informed psychological support. For so long, I believed—and others fed my belief—that my body was the way it was because of some inherent failure on my part. I’ve lost count of the number of times I’ve simply been told to ‘eat less, and exercise more’ (including by mental health professionals). That was never going to work for me—I needed psychological support that helped me to understand why I eat the way I do, and to provide me with other coping mechanisms when I need them.

Holistic care has also been central to this—health professionals across the range of services that I have accessed who understand my needs as a person with an eating disorder, whatever my weight. That means, a GP who understands that my eating disorder has prompted nutritional deficiencies, and treats them compassionately alongside my mental health needs, and a personal trainer who has taught me to love exercise for the way it makes me feel, not as a punishment.

But along the way, I have also experienced a lot of bad care. Health professionals who have made me feel ashamed for my weight and dismissed my concerns because I don’t look like the stereotypical eating disorder patient. They have frequently centred my weight and weight loss as the primary goal for my health—as though I wasn’t aware I was living at a higher weight! I’ve experienced a range of treatment from dismissive to outright discriminatory. Far from helping me recover, this care makes me feel worse about myself, usually leading to a worsening of my mental health (and often weight gain). I hope this guideline demonstrate the pernicious effects of weight stigma, right down to the language we use to describe eating disorders as they present in higher weight as somehow different from the same condition at a low weight (e.g., ‘atypical anorexia nervosa’). Everyone is deserving of equitable care, regardless of what their body looks like.

Earlier identification and access to support likely also would have helped my recovery. My eating was viewed primarily as a weight issue by me, my family and health professionals, which got me caught in a spiral of thinking I was never good enough. Support and education for family members would also have helped to communicate what was happening with me and why. There is still a perception that people with eating disorders are thin, young, white women. If you don’t fit into this body type, care can be dismissive, and there is an absence of culturally appropriate treatments and supports.

While I’ve experienced some very bad treatment, some has been good, too. This gives me hope that there’s a future for eating disorder treatment without the stigma. I hope too that this guideline showcase the positive and proactive approaches to the treatment and support that works.“

-Jo Farmer, lived experience advocate and Guideline Development Group member.

“I grew up chubby and as I entered adolescence and adulthood that became ‘overweight’ and then ‘obese’. I have a few physical health issues that caused me pain and discomfort and I was told that losing weight would help and I should eat smaller portions and try to exercise more.

The first time I got this advice I was 10 years old. At age 10, I was told by my doctor that no one would ever love me at my current weight and that following his advice would make me healthier and happier. I followed this advice but never lost weight, so I was repeatedly doubted by many different medical professionals, so they repeated their advice. I missed out on a lot of typical teenage experiences by being at the gym and avoiding situations where I’d have to eat with people.

My eating disorder wasn’t identified until I was admitted to an inpatient mental health unit at aged 20 but at the time, I wasn’t in a place to treat it as depression and anxiety took priority. It took a few years before I was ready to get treatment for it, and I addressed it with my psychologist of the time. I was told advice that over the course of my life I have become very familiar with, eat less and exercise more. If I lost weight, then there’d be less fuelling the issues behind my disordered eating. Or at least that’s how it was explained to me.

It took me some time to find a medical team I could feel comfortable with because even after explaining that I had an eating disorder, doctors would still tell me how much easier and better things would be if I lost weight. After 18 years and lots of support from family and medical professionals from various disciplines, I’ve stopped trying to lose weight and am focusing on healing my disordered relationship with food.

As I get older and my friends and family start having children, I’ve been worried that they will end up in a similar situation to what happened to me. My hope for these guidelines is that they teach people that eating disorders aren’t just for certain body types and that they lead to better supports in place for this under-recognised group, that the young people in my life can get diagnosis and appropriate treatment no matter what they look like.

- Zoe Bower, lived experience advocate.