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Talk to someone now. Call our National Helpline on 1800 33 4673. You can also chat online or email

Butterfly’s Lived Experience Community Insights Group


What is the Butterfly Foundation’s Lived Experience Community Insights Group? 

The Butterfly Foundation’s Lived Experience Community Insights Group (LECIG) was an advisory group, co-Chaired by Butterfly’s CEO and an appointed group member, to provide strategic advice on how Butterfly can continue to incorporate lived experience perspectives across the organisation.

The LECIG represented a diverse range of eating disorder and body image experiences and demographics, including the perspectives of experienced carers. 

LECIG members were advocates for positive change in eating disorder treatment and care.  They were invited to undertake professional development and training opportunities, further developing their advocacy, policy, leadership, and storytelling skills. This was to ensure that group members would continue to be active mental health advocates once their two-year term came to an end.

Members met quarterly to inform and help set the agenda for Butterfly’s upcoming work to support our community.  

The impact of Butterfly’s LECIG

After two years of operation, in April 2023, Butterfly’s Lived Experience Community Insights Group (LECIG) has come to an end. The 13 members of the LECIG have ensured that Butterfly listens to and is informed by lived experience expertise. Since the group’s inception in 2020, members have:

  • Informed Butterfly’s strategic priorities and engagement with people with lived experience
  • Delivered a unique set of insights into how the eating disorder system of care is experienced by consumers and carers through an exploratory exercise that created The Lived Experience Journeys through the eating disorders systems of care report. The report has been utlised to inform various strategies and to understand pain points with accessing appropriate care.
  • Contributed to Butterfly’s Research paper eating disorders and stigma and provided recommendations for the role that Butterfly can play in creating anti-stigma and discrimination reduction initiatives.
  • Contributed to the development of Peer Workforce Guidelines (not yet available).
  • Participated in several discussions with the Department of Health to voice the need for greater lived experience involvement and highlight structural stigma faced when seeking support for an eating disorder.
  • Participated in several consultations including ANZAED’s development of the connect.ed credentialing platform, NEDC’s revision of the Stepped System of Care model, and several other projects across Butterfly.

The group has had a positive impact through amplifying members knowledge of the eating disorder sector, increasing members understanding of the diversity of lived experiences and helping members to feel more confident so that they are ready contribute their lived experience expertise through future committee work.

“I have been able to participate in many more lived experience consultations and working groups which I am grateful for. I never knew this would be something I would become passionate about and influence both my personal and professional life.” – Melissa

“For once I felt like I was actually being heard when it came to my experiences and the challenges I faced. I’ve always highly regarded Butterfly and the organisation has helped me through some of the toughest times. I never thought I would one day use my experiences to help Butterfly…such an honour and it has made me feel like I have a purpose.” – Brooke

Butterfly will soon be developing a new lived experience governance structure which will build upon learnings from the LECIG. If you are ready to step into a lived experience leadership role at Butterfly, then you might like to join the Butterfly Collective, our lived experience network, to receive details on how you can apply to be a member of the upcoming governing body. More information and details on how you can apply will be coming soon.


Meet the LECIG Members (2021 – 2023)

My name is Brooke and I am a rural journalist who recently moved to Western Australia from regional South Australia. I have battled an eating disorder and body image issues for almost half of my life including bulimia nervosa, purging disorder, other specified feeding or eating disorder and body dysmorphia. I feel extremely honoured and grateful to have been chosen as a LECIG member and to use my experiences to help an organisation that helped me. This honestly means everything to me. And I feel really excited and motivated to be onboard with 13 other likeminded legends. 

I don’t want anyone to face the challenges I have faced or to feel like they are alone. I believe people with lived experience have the power to promote positive change through conversation, awareness and by shining a light on the realities of life with an eating disorder. I’m particularly passionate about rural, regional and remote Australia and the lack of services and support available for people suffering with an eating disorder and those caring for them. Somebody’s postcode should not define the level of care they are able to access or receive. I’m also passionate about raising awareness, reducing stigma and normalising conversations around mental health. 

Hi, I’m Rachelle and I live in Melbourne with my Fiancé and my dog, Fen. I am a Communications professional and long-time advocate and supporter for Butterfly. When looking back on my experience with anorexia nervosa in my late teens, I noticed how different this experience would have been if the appropriate support materials and knowledge were readily available where I lived. This, and my passion for wanting to use my skills to make a difference, has driven me to be part of the LECIG. 

As a professional communicator, I am experienced in advising leaders on strategic matters, and am required to be a voice at the table for employees of organisations, ensuring feedback is heard and considered when developing initiatives. Having been through an eating disorder and through the long journey of recovery, I am determined to contribute to the work Butterfly does through applying my work and personal experiences to provide hope to those suffering from an eating disorder or body image issues, and those who care for them. 

I am a Social Worker and have experience with Other Specified Feeding and Eating Disorder (Atypical Anorexia). I spent most of my career as a youth worker supporting young people who presented with different mental health issues or concerns. In my role, there was rarely a young person who presented with good body image or a healthy relationship with food and exercise. This was heartbreaking to see the amount of young people struggling with these issues and the prevalence of eating disorders within the community. This enhanced my desire to increase awareness and education, improve treatment options and reduce stigma. 

The reason why being a member is so important to me is because I feel that people who live in larger bodies are underrepresented in the eating disorder sector and our voices need to be heard. I have experienced discrimination, weight stigma and fatphobia my entire life. There needs to be more changes as it is having significant impacts on body image issues and disordered eating. I want to use this opportunity and my own lived experience to help advocate, guide and start conversations about the treatment of eating disorders in Australia. 

Hi my name is Dominik and I suffered from anorexia myself and ended up being a carer later in my life for a loved one with bulimia nervosa. I work in the tech start up world where I get to work with a lot of people all around the world and manage a small team of developers. I’ve been going to a lot of different kind of support groups over the last 10 years which has been invaluable to my recovery. 

I am passionate about raising awareness about eating disorders and dispelling the stereo types and myths that come with it. I’m hoping to open up the discourse around this issue to a more accepting and broader audience. 

My name is Emily (she/her) and I am currently studying my honours in Political Science and working as a Community Services Program Manager. I applied for the LECIG as I have experience caring for my mother who struggled with enduring anorexia. I hope to contribute my prior experience in individual and community-based advocacy and understanding of public policy to the group in a way that will influence positive change in both the Butterfly Foundation and the broader sector. 

I understand that a lot of people applied to be a part of this group and I count it a privilege to be involved. This group is particularly important to me as I see it as an opportunity to raise awareness about the unique experience of young carers of parents with eating disorders. I also hope that as a group we can propose innovative strategies and ideas to address the numerous gaps that exist in both the public and private systems that often perpetuate a revolving door system of care. 

I am a Climate change litigator and the type of eating disorder I have experienced is Anorexia Nervosa. I was the Co-founder and former Vice President of Bridges Eating Disorders Association of Western Australia and have joined the LECIG to help in eating disorder prevention and services be led by those directly impacted and reciprocating the favour that an army of people – loved ones, health care professionals, advocates with lived experience – extended to me when I was unwell. 

I am a proud queer woman living in Sydney. I am trained as a social worker and have spent the past few years working in schools and am passionate about early intervention and prevention of eating disorders and body image related distress. I’ve struggled with Binge Eating Disorder since childhood but was only diagnosed in my late twenties and still find it hard to access effective treatments for my condition. In joining the Lived Experience Insights Group, I hope to pave the way for young people and LGBTQIA+ people to access effective, compassionate, and well-established care for eating disorders in the future. 

Originally from Canada, I now live with my partner, daughter and dog in Melbourne, Victoria.  I studied Engineering and Business, and I have held executive roles in marketing and strategy as well as working as a consultant in the areas of organisational development and change management before moving to Australia.  I currently spend my time working with not-for-profit Boards. 

In early 2020 my 16-year-old daughter started showing signs of disordered eating and has since been diagnosed with anorexia.  Butterfly Foundation’s work with schools and National Helpline were both critical resources that helped me identify the issue at an early stage.  Since then, I have tried to learn as much as possible about eating disorders and the pathway to recovery, and to support our daughter in returning to healthy eating.  For me, being a part of the LECIG is an opportunity to contribute my skills to an organisation that makes a huge difference for people experiencing eating disorders and their carers on a daily basis, as well as having an impact on a national level through the National Eating Disorders Collaboration. I hope my participation will help move the dial on early recognition of signs of disordered eating, dispelling myths about ED’s and more easily accessible recovery options. 

Otherwise known as Zeddi, Big Z, Zaz, I have a personal experience of Anorexia Nervosa & binge eating disorder. I’m studying social Work at the University of Sydney and am also a youth representative for Headspace’s youth advisory group. 

Being a part of the LECIG team fills my hearts greatest desire & dream- to help those struggling with mental health problems, especially eating disorders- a potentially life threatening, destructive, consuming disease. LECIG is the perfect platform for me to use my experience, story & voice to improve butterfly services, wider policies & public understanding of eating disorders. It is such a powerful blessing & opportunity to work towards a) preventing the development of eating disorders and b) improving service systems for those who will struggle with eating disorders in the future! 

I’m Milo and I’m in my final year of studying law! I’ve experienced restrictive eating disorder/ anorexia. I have worked with young LGBTQIA+ people in my community for over two years and have found that there is an overrepresentation of LGBTQIA+ people with eating disorders and I wanted to be able to speak to that as someone with a lived experience of being part of that community and having struggled with an ED. I am also passionate about intersectionality and want to address how eating disorders can affect the more marginalized members of our society as they often are not considered in the eating disorder space. 

My name is Paige, I’m from Victoria and I am currently studying forensic psychology! I also volunteer for Reach Out and hope to go into child protection in the future. I have experienced body dysmorphia and disordered eating since a young age and became more apparent when I got older and was diagnosed with rheumatoid arthritis. 

Hearing stories from other people played a huge role in my recovery and understanding of body acceptance and healing. Being a part of the LECIG community means to me that I can help to be a voice for those with medical conditions who must take medication whilst struggling with body dysmorphia or other eating/body image-related issues. 

I’m a Support Worker at Domestic Violence Refuge & Youth Transport Worker for Out-Of-Home care and have experience managing Anorexia, Orthorexia, Binge Eating Disorder. I have spent majority of my working life around children and see the areas that can be improved around the way we speak about our bodies and food. This is a space I’d like to research and implement in programs targeted towards young children in building self-confidence and intuitive eating patterns. 

Being part of LECIG Means having my voice heard. I struggled in recovery as I never felt heard by both family and professionals. It always felt like my eating disorder was downplayed and not serious enough for real support. I do not believe in that anymore and I want to make sure that everyone struggling is able to receive the support they need, no matter the severity of their disorder. I am excited to be part of the policy making and change in a space where there is so much work to be done. 

I am currently in my first year of studying a Bachelor of Psychology (Honours) at Macquarie University and have been recovering Anorexia Nervosa for over 4 years. I have always been eager to continuously raise awareness about eating disorders as when I was diagnosed, I was confronted with the little awareness my friends and family had in how to support me. I battled with myths and society standards which limited my capacity to grow and recover. This led me to organise an eating disorder awareness day at my former high school. I contacted the Butterfly Foundations ambassador, Mia Findlay, to speak at my school which was such an amazing experience! 

Additionally, I was used as a case study for successful reintegration into academic studies as part of the intensive program run by the children’s hospital at Butterfly House. My experience in raising awareness helped me to become a part of Butterfly’s LECIG. The LECIG allows me to move forward and grow, as well as use my experience and ideas to enrich the community with support. 

Hi, I’m Meg. I have experience as a speaker for Batyr – delivering youth mental health workshops to start positive conversations about mental health and encourage help-seeking. I feel very privileged to be a voice for other people experiencing eating disorders, to advocate for change and offer hope that recovery is possible. Having experienced Butterfly foundation programs during my own recovery journey, I feel honoured to be able to give something back to the community. 

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