How can we support people to share their lived experience of an eating disorder?

Sharing your lived experience of an eating disorder can be daunting and often requires an immense amount of courage to talk about.

That’s why it’s critical to be supportive and respectful of those willing to speak up and share their experiences – because not only do we know that Talking Helps, but sharing can help demonstrate full recovery is possible.

We asked our Butterfly Collective and Pathfinders community how they can feel further supported when sharing their lived experiences, whether that is with a person close to them or more broadly in front of a large group of people to spread awareness. It all comes down to creating a safe space underpinned by empathy, compassion, validation, and kindness.

Here is what our community had to say:

• “Never denying their reality even if it isn’t what is common to others. Having clear boundaries about how we talk about and present eating disorders by going beyond simply not talking about numbers.” Rachel, she/her, 34, WA
• “It can be very hard at times to talk about the way in which an eating disorder has impacted your life. Have a safe environment in which you are supported and cared for would definitely help.” Ruben, he/him, 19, TAS
• “Everyone is different, everyone has their story and struggle. There is a common “why”/”Theme” underneath, but how we describe or share needs to be respected. We must always be respectful, honest, open and support everyone with where they are at with their challenges. Kelly, he/him, 46, NSW
• “I think the most important thing an individual can do is truly listen and acknowledge that the ED sufferer is simply that – an individual suffering from a mental condition, rather than an individual defined or ‘tainted’ by their ED.” Alina, she/her, 33 ,ACT

“I think, from my extensive experience, both professionally and personally, the key is to be able to listen, be non-judgmental, and acknowledge that each person, while their diagnosis may be the same, they are individuals. Real people, facing completely different life struggles, which can be complicated by so many variables that people face on a daily basis.” Donna, she/her, NSW, 54

• “I have a lot of hope for our approach to eating disorders as a community. I believe times are really changing and there is a lot more openness about these kinds of things, than when I was growing up. I think something that holds us back though, is the emphasis on recovered individuals “looking healthy” to the outside observer. Health comes in a lot of shapes and sizes, and you really cannot gauge someone’s health from their appearance alone. I think we need to be accepting of recovered individuals living in small and bigger bodies. Genetics and environmental factors have a big impact on someone’s body shape and size. What might be a really small or big size to you, might be quite normal or expected for someone else – it’s all relative.” Melissa, she/her, 25, NSW
• “Support people by giving them a key contact to act as their go to support when they are placed in times and situations that they are using their lived experiences. Have that key person be someone who has also worked in a lived experience role so it’s like a full circle. The support person has also been the lived experience worker and can potentially connect on a slightly better level. It’s peer support for the peer support.” Caitlin, she/her, 29, VIC
• “Be accepting of everything they say. Recognise that their feelings are valid and they’re not simply seeking attention or going through a phase.” Lorraine, she/her, 44, VIC
• “Ask them. If I were sharing my story in person, having people listen non-judgmentally and ask questions would make sharing my story worth it. I’d also like to share my story alongside others.” Breanne, she/her, VIC, 34

“Listen and have empathy. All people suffering from body concerns or disordered eating just want to be heard and understood. So many times we have been told it’s a choice. All we want is love, care and respect when we are being vulnerable and every bone in our body tells us to shy away from the pain and keep it hidden.” Imogen, she/her, 17, NSW.

• “Non judgmental responses, empathy, consistency, and predictability in your response to them/their sharing, deep listening, reflective listening, letting them take the lead.” Elise, she/her, 29, NSW.
• “Making sure that people feel comfortable and safe before sharing and only sharing what feels comfortable. Also respecting other’s privacy if someone brings up in an experience. Also actively listening to others while not overtaking other’s experiences.” Isabelle, she/her, QLD, 18
• “Everyone is different and everyone needs to / deserves to be heard. To be appreciated and understood for who THEY are, not apply a textbook one-size-fits-all approach – at least not until you can determine the ins and outs of the persons illness, because I believe that every experience is unique. This kind of approach will help enormously in the person to feel safe, protected, valued and respected.” – Tanya, she/her, 57, VIC
• “Listen to them. Let them be heard and ask them how you can best support their journey. Don’t speak badly about your body in front of them and be understanding of their struggles.” Bella, she/her, 27, NSW
• “How carers can best be supported is for them to be reminded that they are not at the centre of the eating disorder story and that good and effective allyship looks like: creating space for the people who need to talk and share to be able to, and then listening first, talking second.” -Lizzie, she/her, VIC

In summary, when someone shares their lived experience, remember to:

• Provide a safe space with respect and without judgment for the person sharing
• Be present and listen to what the person has been through while acknowledging and validating their experiences.
• Remember that everyone’s story and struggles are different and that someone’s lived experience of an eating disorder might not have any similarities to your experiences.
• Don’t label or define someone by their eating disorder diagnosis or story. We are all human beings experiencing various challenges.
• Let the person share with a sense of agency regarding what they feel comfortable sharing, uphold boundaries, and respect the person’s desire to keep information private if they disclose it to you.
• Provide compassion, warmth, and empathy, while highlighting the person’s inner strength in going through tough experiences and coming out the other side to tell their story.

Join Butterfly’s Lived Experience Network, the Butterfly Collective

Lived experience of eating disorders and body image concerns lies at the heart of Butterfly’s work as it connects us to our origins and the communities we serve.

By drawing upon lived experience wisdom and embedding it across all our work, we can ensure that our advocacy work, programs, projects, and services represent the diverse nature of our community and their needs. The Butterfly Collective is an online lived experience network involving people across Australia who either have a lived experience of an eating disorder or body image concerns or are a carer, family member, or friend of someone with a personal experience. By sharing your insights, you could help guide Butterfly’s work, but also support and inspire someone else on their own recovery journey.

Join now

Get support

If you’re experiencing an eating disorder, disordered eating, body image concern, or are worried about someone you care about, reach out for support as soon as you think something might be wrong. Early intervention can have a marked difference on an eating disorder’s severity and duration. Eating disorders do not discriminate; no matter your appearance, body size, gender, sexuality, ethnicity or economic status, you are worthy of recovery and support.

Butterfly’s National Helpline

Connect with Butterfly’s compassionate and expert counsellors by calling 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au  Confidential and free support is available 7 days a week, 8am-midnight (AEDT).

HOW WE HELP

Search Butterfly’s Referral Database

Seeking professional support for eating or body image concerns can be an important step towards improving your physical and mental health, and often there are a wide range of treatment professionals who need to provide care to ensure a holistic recovery. A GP is a good place to start if you are unsure of what might work best for you. To find quality eating disorder professionals and services closest to your area, search Butterfly’s Referral Database.

SEARCH NOW