Kindly Do, Kindly Don’t: Advice from people with lived experience
Over 1.1 million people in Australia experience an eating disorder in any given year, and less than one in three (30%) of individuals affected by eating disorders reach out for help. Body Image and Eating Disorder Awareness Week (BIEDAW) is a vital time to raise awareness, break down stigma and encourage help-seeking.
While our research shows that awareness of eating disorders has increased over the past few years, deeper understanding remains low and misconceptions and stigma remain high.
To combat this, we’re encouraging people to be more mindful of their everyday actions and language – particularly around food, bodies, appearance and eating disorders – and the best people to learn from are those who have lived experience.
For BIEDAW, we asked our lived experience community, the Butterfly Collective, what misconceptions and stigma surrounding eating disorders need to be dismantled, and their Kindly Do, Kindly Don’t advice as to how you can best support people living with eating disorders and body image concerns.
Kindly Do: Remember eating disorders are a psychological illness – they don’t have a ‘look’
People with lived experience of eating disorders told us that one of the most significant misconceptions surrounding eating disorders is that you can tell someone has an eating disorder by their appearance. It can also be triggering when people assume you are recovered because your body has changed.
“The biggest misconception that needs to be reduced is that eating disorders ‘look’ a certain way. You can’t tell if someone has an eating disorder just by looking at them. There are numerous factors which can contribute to someone looking a certain way, and just because someone doesn’t look like a stereotype, it doesn’t mean they aren’t severely impacted by the disease.” – Jemma, 34, WA
It’s important to remember that an eating disorder is a psychological illness – while there may be some physical symptoms, it’s not always possible to see what’s going on inside.
Eating disorders also don’t discriminate – they can impact anyone, of any age, gender, body size/weight, sexuality, ethnicity or socioeconomic status.
“The biggest misconception was my loved ones assuming that “weight restored™ or “medically stable” = recovered. It absolutely did not. I would look different and so people would assume things were different…They didn’t understand that it is primarily a mental illness that may or may not have physical signs. My brain was still the same. The disordered thoughts, compulsions and fears in my head were still the same – in fact if anything they were now louder because the ED hadn’t been getting its way. They would stop reaching out to help me or check in on how I was going. Please, please remember it is a mental illness, that may or may not have physical symptoms. You cannot see an eating disorder. You cannot see what is going on in someone’s head. Thinking you can only makes it harder for those struggling to reach out and get help.” -Sophie, 25, WA
Healthcare professionals
It’s also particularly harmful when healthcare professionals believe stereotypes or misconceptions about eating disorders, dismiss your concerns, or only focus on your weight.
“Kindly, don’t dismiss that I have an eating disorder just because I am not in a smaller body and still look ‘healthy’.” – Rachel, 33, WA
To help you advocate for yourself in the doctor’s office or other healthcare settings, Butterfly has created a ‘Kindly Do, Kindly Don’t Support Script’. You can input your concerns, medical history, goals for the appointment and advise health professionals of language and actions that may be helpful or harmful to your recovery.
Kindly Do: Remember it’s not just about food
Eating disorders often emerge as a way of coping with difficult feelings, situations or trauma. It can be helpful to learn about the factors that contribute to the development of the eating disorder with a trusted healthcare professional.
“The misconception that has impacted me the most is that my eating disorder was all about food and exercise and if I just ate then I’d get better. My restriction of food and compulsive exercise were just symptoms of a mental illness that was based in anxiety and need for control.” -Lily, 27, VIC
Kindly Do: Recognise that eating disorders are not a choice
“The biggest misconception that impacted me was that it is a choice and that it sits outside the impact of trauma, other mental illnesses such as PTSD, depression, anxiety etc., and personal situations. The lack of understanding around why eating disorders occur and what sustains them creates greater shame.” -Jemma, 34, VIC
Kindly Don’t comment on my body or appearance
A key part of recovery can be learning to separate your worth from your body, but it can be difficult when people around you comment on your appearance – even if it’s well intentioned.
Kindly don’t comment on anyone’s appearance or body – ever. It’s particularly important not to celebrate weight loss, as this sends the message that someone’s body is only valuable once it’s changed, and that the thin/fit ideal is something that we should be striving for to gain acceptance and praise.
Instead, comment on someone’s personality, energy and talents, and remind them that they are worth so much more than what they look like.
“Kindly, don’t talk about my body. Ever. Even if you think it is complimentary.” -Rachael, 21, WA
Kindly Do: Remember it’s not just young people impacted
Almost one in four (24%) of people experiencing an eating disorder in Australia each year are aged between 40-59 (Paying the Price 2024). Additionally, 23% of contacts to Butterfly’s National Helpline in 2023 were aged 35 years and over.
It’s important to advocate for improvements to treatment and support for all people, of all ages, and recognise that people do not ‘grow out’ of eating disorders – they need specialised care and support.
“At the moment, having so much funding go towards early intervention (which is awesome) is hard, as there doesn’t seem to be much assistance or research going into treatment options for those who have been battling the disease long-term and who were ‘let down’ by the health systems and fell through the cracks decades ago. More needs to be done for those in their 30s and 40s who haven’t been able to unstick themselves from their eating disorders, as the long-term implications of chronic illness are severe both health-wise and financially.” – Jemma, 34, WA
Kindly Do learn about and disrupt diet culture
Diet culture refers to a set of ever-changing myths and beliefs about bodies, food and eating, most commonly that body weight equals health, that the thin or fit body ideal is something that must be strived for above all else, and that food is simply ‘good’ and ‘bad’. Diet culture directly impacts the way we talk and think about health, exercise, bodies and appearance.
“Kindly, don’t perpetuate diet culture’s insidious lies and reinforce ideologies that attribute food to morality.” – Rachael, 21, WA
This thinking is embedded across our society, and unfortunately it means that disordered eating, like dieting, has become normalised and celebrated. It also makes eating disorder recovery that much harder.
“People around me thought my eating disorder was a choice. At first, I hid/protected my ED by insisting I was just “trying to be healthier”. I was praised for seeming to “eat healthy” and “value fitness”. People complimented my changing appearance. It only fuelled the ED… [and] It also made it hard to give up – not only was I being asked to give up my coping skills, but also the acceptance and admiration of others.” -Sophie, 25, WA
Read more: Diet culture 101 – What is it and what can we do about it?
Kindly Do remember carers need support too
Eating disorders are felt by the entire family network, but parents, carers and family members can play a significant role in recovery and supporting their loved one.
“The ongoing complexity of treatment impacts my experience most as a parent and carer. This eating disorder doesn’t just affect my unwell child, it affects the whole family, and therefore ripples out to our extended support networks as well. People don’t seem to realize the constant worry that accompanies my journey, and my inability to do much to help my child recover.” Kathryn, 50, VIC.
Kindly Do reach out for support if you’re impacted
An eating disorder can feel incredibly isolating, but talking helps, and we’re here to support you.
- Butterfly’s National Helpline provides confidential and free counselling, support and information 7 days a week (8am-midnight AEST/AEDT) for anyone in Australia who is concerned about eating disorders or body image concerns. Call 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au
- Find an eating disorder healthcare professional – search our Referral Database for healthcare professionals that specialise in eating disorders.
- Find out more about how we help
- Join an eating disorder recovery support group
About Body Image and Eating Disorder Awareness Week (BIEDAW)
Body Image and Eating Disorders Awareness Week (BIEDAW) is a national week to raise awareness of body image concerns and eating disorders, celebrated annually in the first full week of September (2-8 September 2024).
This BIEDAW, we’re sharing important reminders of what people should and shouldn’t say, think, or do when it comes to bodies, appearance, food and eating disorders, so we can all work towards a more BodyKind Australia.
It’s a vital time to raise awareness for how all people – from health professionals to parents and educators – can support those vulnerable to, experiencing or recovering from eating disorders and body image issues in their everyday language and actions.
