Using Lived Experience to Create Change
What is a Pathfinder?
Butterfly Pathfinders are people with lived experience of eating disorders and/or body image concerns, as well as carers family members and supporters who choose to use what they have learned through their journey to help others. Pathfinders work alongside Butterfly in a range of ways. This may include sharing their stories at events, in the media or through campaigns, as well as contributing to research, advisory groups, program development, co-design activities and resources.
Each Pathfinder brings their own perspective and insights. Together, they help challenge stigma, increase understanding of eating disorders and body image concerns, encourage help-seeking and contribute to improvements in the way communities, services and organisations respond to people affected by these experiences.
Butterfly is committed to building a Pathfinder community that reflects the diversity of people affected by eating disorders and body image concerns. We recognise that no single story represents everyone’s experience, and continue to work towards including a broad range of voices and perspectives.
The power of storytelling
Stories have always been a powerful way for people to share knowledge, make sense of experiences and connect with others. They help us understand perspectives different from our own and remind us of the things we have in common.
When people share their experiences, they can challenge assumptions, create understanding and help others feel less alone. A story can bring visibility to experiences that are often hidden or misunderstood, opening opportunities for connection and learning.
For people affected by eating disorders and body image concerns, hearing a range of lived experience stories can help challenge the idea that there is one way an eating disorder looks or one path through recovery. Stories can remind people that their experiences matter and that support is available.
“I never imagined that something that I once felt ashamed of could be something I could use to support understanding and connection.” – Sam, Pathfinder
Become a Pathfinder
Applications to become a Butterfly Pathfinder are currently closed.
For other ways to share your lived experience, please join the Butterfly Collective. Thank you!
Request a Speaker
Butterfly Pathfinders openly share and reflect on their experiences by telling their unique stories, to deliver messages of hope and recovery and to creating new ways of engaging with and understanding life in a safe and supportive non-clinical environment.
Butterfly Pathfinders are available to provide lived experience insights on eating disorders and body image for media requests, speaking opportunities and events. Depending on the event, there may be a direct payment required to the Pathfinder/s to acknowledge the value of their lived experience and compensate for their time and expertise. Our Paid Participation policy can be found here.
More about the program
Although over 1.1 million Australians are living with an eating disorder in any given year, experiencing one yourself can feel extremely isolating. Unfortunately, less than a third of people with eating disorders seek professional help. Stigma and shame are the most frequently identified barriers for accessing treatment. Other factors include negative attitudes towards seeking help, feeling helpless, lack of encouragement from others and lock of knowledge about help resources.
The purpose of Butterfly Pathfinders is to educate, support and encourage people to seek the help they deserve through powerful storytelling. Eating disorders can be extremely isolating however they cannot survive in darkness. Butterfly Pathfinders want to bring their experiences into the light to help other people pave their own path towards healing.
Founded on the principles of respect, shared responsibility, and mutual agreement of what is helpful, Butterfly Pathfinders create a crucial space where anyone in attendance in need of support can find affiliation, make a real connection and feel a sense of hope that can come out of the experience of truly belonging.
Eating disorders do not discriminate. The reality is that they can impact anyone regardless of gender, age, race or socioeconomic status.
Additionally, numerous types of eating disorders exist, making it even more important to share a diverse range of stories. In Australia, of those living with eating disorders, 47 per cent have Binge Eating disorders, 12 per cent have Bulimia Nervosa, three per cent have Anorexia Nervosa and the remaining 38 per cent have other eating disorders.
Butterfly Pathfinders are a diverse group of individuals with a diverse range of experiences, reflecting the diversity of eating disorders and body image issues. This is because more diversity in stories equates to more Australians feeling as though their own experience is reflected. This in turn encourages help-seeking behaviours, which is essential to overcoming eating disorders and body image concerns.
Butterfly Pathfinders have also presented to many different communities, to spread awareness for eating disorders and body image concerns Australia-wide. These presentations are tailored to the needs of the audience, in line with the experience of the Pathfinder to generate support and encourage help-seeking behaviours to a diverse audience.
This is fundamental in encouraging help-seeking behaviours and spreading the importance of prevention strategies, as research has found that individuals from certain communities such as the LGBTQIA+ and Aboriginal and Torres Strait Islander communities tend to be at greater risk of developing disordered eating behaviours.
Butterfly Pathfinders engage in an array of opportunities including:
- Being a guest on Butterfly’s Let’s Talk Podcast
- Contributing to Butterfly’s Blog
- Sharing their story with the media
- Speaking at events and conferences
- Being a part of Butterfly campaigns
- Participation in research and focus groups
- Community and organisational webinar guests
The importance of safe sharing
Every time we share our story, or more generally talk about eating disorders and body image issues, there is an opportunity to help to break down stigma, debunk common myths, and educate the audience.
Unintentional use of unsafe or misleading language could potentially trigger someone into harmful thoughts and/or behaviours. Therefore, you should avoid the use of language which places passive judgement (for example ‘obese’ and ‘skinny’/‘thin’), and not include specific behaviours, especially not accompanied with quantifiable figures. For more information about this, please utilise the resources below.
The language used must be chosen carefully, sensitively, and accurately. Language in the mental health sector, and specifically around eating disorders, continues to evolve. The Butterfly Pathfinders are across the latest language trends to protect the community and individuals to whom they are speaking to.
“Storytelling is about connecting to other people and helping people to see what you see”
– Michael Margolis
