Box 7 A lived experience perspective: identification and assessment

“My daughter’s eating disorder sneaked into our lives so quietly that we didn’t notice at first. She was 15 years old and during early puberty had gained an amount of weight that placed her into an ‘overweight’ BMI body. So, when she suggested she might try some ‘healthy eating’ we didn’t think that was a warning sign of anything more insidious. Within 6 months, she had lost more than 20% of her body weight and her period had stopped. We were very concerned as she had withdrawn from her family, wasn’t her normal happy self and her behaviours and fears around food were not normal. Our first visit to the GP was the ‘sliding doors’ moment where an eating disorder should have been identified. Instead, she was weighed and we were told, ‘It’s fine, she’s still a normal BMI. Her body probably went into shock from the weight loss and if she maintains this weight then her period will return’. Of course, that was not the case and it took another eight months before she finally received a diagnosis of Atypical Anorexia and formal treatment/refeeding began. I consider our family lucky in that despite the unacceptable delay in beginning treatment, my daughter is now fully recovered. My wish would be for families who present to their medical practitioner asking for help, to have their concerns taken seriously on Day 1.

My message to clinicians: An eating disorder cannot and should not be diagnosed by an arbitrary number on a scale…be curious and ask more questions. Please learn as much as you can about eating disorders and continue to keep your knowledge up to date with new findings/studies. Question your own biases/understanding around weight vs health and learn about Health at Every Size. Learn how to identify an eating disorder and the best evidence treatment modalities available. Eating disorders exist in all age groups, all body sizes, all genders, and all cultures. The full recovery rate from a restrictive eating disorder such as anorexia remains abysmally low so early intervention and immediate action is key to helping as many people as possible recover and go on to fulfilling lives…please learn how to be a part of the solution! For an adolescent sufferer, the carers/parents are key to doing the hard work of refeeding at home so learn how to support and empower them—this is hard work for everyone, but the rewards are huge.”

- Julia Quin, lived experience advocate and Guideline Development Group member.