Who inspires you to share your lived experience?

Sharing your lived experience of an eating disorder can both be challenging and healing.

Sometimes you need some extra encouragement and inspiration to feel safe and confident to share your experiences, with your close network or to a wider audience. Having someone in our lives who inspires us can remind us of our inner strength, and resources while supporting recovery. Other networks might inspire you to find the courage to share your lived experience story in front of others.

We asked Our Butterfly Collective members who inspires them to share their lived experiences and how they are inspired by this person. Inspiration came from family members, partners, friends, peer recovery coaches, lived experience advocates and some of our members were inspired by themselves and their own courageous actions.

Some of our members were inspired by the wisdom and expertise of lived experience generally and the value this expertise brings:

• “I am inspired by the power, vulnerability, and spirit of others with eating disorders in their own healing, and the loved ones and professionals who are standing with them and supporting them. I am inspired by my twin sister who reminds me every day to take care of myself and to show myself compassion, grace and to fight for my future. I am inspired by the work that we are building on, the wisdom and leadership that has come before us – there are histories and communities of care that are moving us forward to a better future, and it inspires me to keep working for collective change.” Rosiel, they/them, 32, QLD
• “Every person that has ever come before me has inspired me. If it wasn’t for them then I wouldn’t know how valuable hearing lived experiences can be.” Caitlin, she/her, 29, QLD.
• “I have been with a Narrative Mentor – Dr June Alexander – as a client for over three years now, using writing as a therapy tool. She has authored over 12 books and recovered from an eating disorder at age 55. Slowly over the last three years, I have been inspired by her work in the ED field as an advocate and have realised there is tremendous satisfaction in having your voice heard when you relate your own ED story to active listeners.” – Tanya, she/her, 57, VIC

Other Collective members were inspired by their recovery coaches or other peer support, who were able to provide a safe space and modelled recovery in a healthy way:

• “My recovery coach who has modelled a healthy and safe support coming from lived experience without harm or judgement.” Rachel, she/her, 34, WA
• “My recovery coach and Butterfly ambassador, Mia Findlay. Having only been in ‘head strong’ recovery for under 6 months (and having had an ED for over 20 years) it very much feels like early days and baby steps are being taken. Despite this, Mia has encouraged me look into the future at what full recovery can mean/feel like and from this I have realised that I have a passion/ambition to help others recover once I am able to do so.” Alina, she/her, 33, ACT.
• “I started recovery around a similar time with one of my good friends. In the early stages, it was really great to support each other through encouragement, and have somebody who simply just got it. Together, we realised within a positive and healthy sharing context that there could be strength in numbers. Further, I am inspired by my former Butterfly Peer Support Worker Jess. Jess was the first recovered person I ever met or came across, at that point eight months into my recovery. Jess was instrumental in the process of my recovery and I have immense thanks and gratitude to her. That experience has inspired me to pursue a career in the eating disorder field, wherein I hope to make positive change to somebody’s life and experience of recovery” Ruben, he/him, 19, TAS

Collective members were of course inspired by their own actions and behaviours, with the understanding that recovery is challenging and can take the willingness, drive, and persistence to get better.

• “To be honest (and trying to remain humble) – myself. To get through this darkness and have the strength to not only push through, but to address challenges – you need to do it. Nobody can “make” anyone recover – it comes from within – a drive / willingness to be healthier. Not just in body, but in mind – this is the hardest part. This challenge has all to do with the challenges within the mind and how you value yourself. This took me a lot of time and, unfortunately, zero help from anyone.” Kelly, he/him, NSW, 46
• “My knowledge/skills as a Psychologist inspires me to share my story to help break stigma around allied health professionals struggling with disordered eating/eating disorders and being able to contribute to the field in other ways by sharing lived experience.” Elise, she/her, 29, NSW
• “I definitely inspire myself. I’m just the past 12 months I have gone through experiencing Anorexia for 10 years to becoming healthy. I am so proud of myself. I never thought I could do it…” Rachelle, she/her, QLD, 47
• “Honestly, I think I have inspired myself the most to speak and tell my story. I have spoken briefly of everything over the years and every person who has heard what I have lived through and what I overcame has commended me. I started to realise how consistently I have been able to gather myself and find strength that I didn’t even think I had from the darkest parts of me and stand strong and survive everything life has thrown at me. I am very proud of myself.” Sienna, she/her, 28, NSW

For some members, family and partners inspired them to get through recovery and to go on to become a lived experience advocates. Members also were inspired to recover to be positive role models for their children.

• “I feel inspired by my daughter to speak up when I hear others talking about diets or losing weight to look good or if they think their children need to lose weight. I want to protect her from that world.” Lorraine, she/her, 44, VIC
• “My 3yo daughter. After giving birth, my eating disorder spiralled. In fact, I didn’t know I had an eating disorder until I had her. I was in a really low and unhealthy place in her first year of life. It was the fact that I never wanted her to experience what I have experienced that inspired me to get help.” Breanne, she/her, VIC, 34
• “My mum and my grandma have inspired me greatly to fight the enduring battle i have with anorexia nervosa. Both my mother and grandmother have had experiences with disordered eating and overbearing guilt and fear of weight gain. Today, they proudly can say they have beaten anorexia nervosa. If they can recover, I have hope that someday I can too.” Imogen, she/her, 17, NSW
• “My partner inspires me to share my story because he is so passionate about understanding my experience.” Elise, she/her, 29, NSW
• “My mum inspired me to share my lived experience with my eating disorder. During my treatment, she would often read blogs, stories and books of those with a lived experience of an eating disorder and their carers. It really helped her at the time to see the bigger picture and have hope that there was light at the end of the tunnel. When I got better, I wanted to give back and be someone else’s beacon of hope, living proof that recovery is indeed possible.” Melissa, she/her, 25, NSW.

Need support talking to children about food, eating, bodies and appearance? Access free resources for families with Butterfly Body Bright.

During times in recovery, we might not have access to someone close to us who can support and encourage us. Celebrities, and social media accounts might serve as inspiration to keep going.

• “There’s also a number of lived experience Instagram accounts that inspire me to share my story too – I had deleted all unhelpful content/accounts and followed lived experience recovery accounts at the beginning of my journey and this helped significantly.” Elise, she/her, 29, NSW
• “The first person who I looked up to and admired for sharing their story would have been Demi Lovato and what they went through with their mental health. I would be listening to their music, watching their interviews and be totally inspired and then read the comments and see the hate that people wrote. It was then that I realised that people will say mean things but between the hate the lived experience was still resonating with me.” Caitlin, she/her, 29, VIC

Finding the right person who inspires you and who provides safety, support, and encouragement can take time and patience.

When reflecting upon who inspires you, you might ask some of the below questions:

• What relationship do I have with this person? What qualities do I admire in them? How do they inspire me?
• Can this person be empathetic and understanding of my experiences? Are they willing to sit beside me and hold space to listen to my lived experience?
• Is this person a positive and healthy role model I can admire?
• Can I inspire others as this person has inspired me? How can I be an inspiration to others?
• What kind of person did I need when I was in recovery?
• How do I inspire myself and what am I most proud of?

About the Butterfly Collective

If you are inspired by these members who are sharing their stories and would like to share your own lived experience perspectives, join the Butterfly Collective by clicking here.

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.

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.

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