How lived experience workers can help Quiet the Noise of an eating disorder

Many people with eating disorders will experience a toxic inner critic – the eating disorder ‘voice’ or ‘noise’.

Often described as an intruder in your mind, the eating disorder voice is a relentless overwhelming and unwanted noise telling you what to eat, how to behave, and making you feel worthless and desperate. It can increase the severity of an eating disorder and requires urgent intervention.

When in recovery, it can sometimes be helpful to connect with people who have recovered from their own eating disorders. Lived experience workers – often called peer workers or peer support – can provide hope and demonstrate that full recovery is possible. They can help Quiet the Noise.

Lived experience lies at the heart of everything Butterfly does, and many of our staff have recovered from their own eating disorder or body image concern. Rhiannon is one of those people.

As one of Butterfly’s Peer Support Facilitators, Rhiannon runs our recovery support groups and peer mentoring programs, where she uses the insights and tools she gained in her own recovery to now help others on a similar journey.

We sat down with Rhiannon to learn about the power of lived experience wisdom in recovery, what’s involved in Butterfly’s support programs, and how you can help ‘Quiet The Noise’ for people with eating disorders this festive season and beyond.

What is your experience with eating disorders?

“I come from a sporting background, and I think a lot of my eating disorder symptoms were quite hidden for some time. My family noticed me withdraw – even from our family unit and they began asking the initial questions. I don’t think any of us fully grasped what I was going through yet – it wasn’t something we knew much about.

I was diagnosed with Anorexia when I was 18, and my eating disorder left me feeling like my world was impenetrable and that people couldn’t touch or reach me, and that was obviously devastating for my loved ones.

I felt very, very numb, and I had stopped doing what I loved, and disconnected socially. My ED had me mapping out days in advance and yet I couldn’t imagine my life a few years ahead from then. 

I remember being at my 21st birthday and seeing people around me enjoying being there, and I had one of many moments where it was like, wow, I feel so far away. I think that’s when I was like, okay, I need support. I started to ask my own questions and began my journey of being intentional with my recovery.”

What was essential in your eating disorder recovery?

“During my recovery, I ended up talking to somebody who had a lived experience, which was really, hugely helpful to me. And I had a full team around me at that point. I did change a couple of different people along the way, but I ended up being supported by a psychiatrist and a GP and a dietician at one point too. But having that peer support, she was very contactable, which made a huge difference to me.

I went to a support group, at the time it was called Tasmania Recovery from Eating Disorders (which has since merged with Butterfly) and that was the first ‘aha’ moment, where I realised all these things I’ve been doing, all these, I guess, rules – were actually things that other people were talking about.

That was the moment where I had to stop denying what was going on because a) hearing from the other support group members validated how I’d been feeling and b) I realised this was something really serious. Attending that recovery support group made such a huge difference to me because it was a safe space in terms of how it was run, and it was the first time I felt seen. It made the experience more human for me. 

I worked on my recovery for a few years and had a few experiences that I thought would’ve tested it, but I never experienced a full relapse again which was really huge, and it meant that I wanted to reach out to Butterfly to see how I could help others in a similar situation.”

What is your role at Butterfly?

“I started out as a volunteer, back in 2018. I am a Peer Support Facilitator and use my lived experience to walk alongside others on their own recovery journeys. I have been a part of running recovery and carer support groups and psychoeducation programs led by our peer workers.

Now, I’m predominately doing one-on-one work with people across Australia and face-to-face with some clients in Hobart, which has been a really, really rewarding experience.”

What’s involved in Butterfly’s Peer Mentor Programs?

“Butterfly’s Recovery Peer Mentor Program (PMP) pairs our Peer Mentors with people recovering from an eating disorder in the community. Peer mentors are people who have recovered from an eating disorder, and we use this lived experience to help the individual set their own recovery goals and maintain the motivation to achieve them.

We get to work up to 90 minutes a week with someone who’s actively seeking recovery, and we do this for 10 weeks at a time, so we’re able to develop this really supportive relationship where the peer mentor can be a safe, stable point of contact during a time that we know can be highly stressful.

We also provide an example of what recovery can look like, which can provide hope and motivation that ‘full’ recovery is possible.”

What’s the most rewarding part of your role?

“Definitely the people I work with – I get to have a profoundly different relationship with the people that I work with, and they know it. Being there for moments where you see someone almost relax, there’s no pressure to tell your story again or explain yourself because we’ve got that common ground [both having lived experience of an eating disorder].

When I see that people are able to feel comfortable and safe, and be in this completely judgement-free space, that’s just the most rewarding part – letting people be where they are at and remodeling hope.

I’ve seen people work through being in a space of denial and being unsure about their experience, to being engaged in their recovery, and eventually developing this excitement for life, and that’s huge. Seeing how brave people are and seeing them being open to working with me and be completely vulnerable and open in their feelings is also really rewarding.”

What’s the most challenging part of your role?

“I always want to do more, and it can be challenging finding that balance where I can accept that I’ve done the best that I can within my capacity and role. The people I’ve met along the way have inspired me so much, and sometimes I think back and wonder how they’re doing and if they’re going to show up to the next recovery support group. Wanting to do more is the hardest part of my role – because I believe in recovery to wellness and yet that experience will be so unique for each person.”

What is the value in incorporating lived experience into eating disorder support?

“I think sometimes when you are at the beginning of a recovery story, or wherever you are on that journey, sometimes it can feel like it’s a long way off or unobtainable to experience ‘full’ recovery. And sometimes hearing from your treatment team that you can recover, it feels a bit absurd and just jarring – how would they know?

But I think sometimes just seeing somebody who has recovered, you don’t even need to spell it out. They’re demonstrating what recovery is, and how they’ve overcome their own eating disorder. And when letting your eating disorder go can sometimes feel impossible, having some with lived experience by your side to demonstrate that things are going to be ok can make such a difference.”

Butterfly’s Quiet the Noise Christmas Appeal aims to spread awareness about the eating disorder ‘voice’ or ‘noise’ that many people with lived experience have identified as playing a large part in their illness. Do you have any insights into this?

“On some days, the noise of an eating disorder can feel like the loudest voice in any room. I think that’s one of the most exhausting parts of an ED, the way it becomes a part of almost every decision. This ‘voice’ had a say on everything and as a result so many of my basic human instincts and connections felt untrustworthy and then nonexistent.

Sometimes on my recovery journey, the adjustments that I was making felt like they were almost angering this voice and it liked to become ‘louder’ and more demanding as a result.

Often, I spoke to a peer worker surrounding these times – coming from her and over time, the ‘trust in the process’ perspective began landing gently with me. 

I’ve reflected on this voice a lot with the people I work with who also have a lived experience, and I’ve found that that voice is still there – it’s a part of me – but it’s not destructive anymore. We often talk about the interjecting voice as being this little warning system, and sometimes it will still chime in, particularly if I’m getting perfectionistic about something, and I’m like “Oh, hello. There you are – I’ve got this, it’s okay.”

We know that often the voice won’t completely disappear, but it’s about learning to respond to it in helpful, healthy ways rather than disordered behaviours.

And those are some of the skills that we talk to in our recovery programs and support groups. It’s powerful seeing people let go of the eating disorder despite the sense of safety and control this might bring to their lives, when they can recognise this isn’t serving them anymore. 

What are your top tips for people who might be struggling with the ED noise?

“I think a lot of people and support people come at it from the perspective of removing this voice – at the time when I was more vulnerable to it this felt very confrontational.

However, something that worked for me was coming back to things that had once felt like me – ‘my roots’– or exploring things that might yet feel like me. These kinds of small moves toward myself indirectly challenged my ED voice, it was less confrontational, and I recognised that I needed that while I was doing the other work.

I guess I think of it like this – the ED had eroded a lot of my sense of self, and when I began turning things around, I put back into my sense of self and that began eroding my ED.

This wasn’t a linear or straightforward experience, and some days I felt like I couldn’t recall who I was as a person, and the people around me supported me to hold this ‘frame of Rhi’.

Sometimes that looked like getting me back to the beach, even if I wasn’t surfing like I had always done –  it was still somewhere I knew I would always be most at peace – holding these spaces for me helped me to reach back out to them.

Nowadays when I work with people, one thing we work towards is reaching back out to these connections or finding new ones. For me at that time, I found that there were these kinds of nudges within me that I could gradually listen to, and trust and I started to listen out for them and my own familiar voice. 

Why should people support Butterfly?

“Being heard was one of the most standout and significant things in my turnaround and accessing recovery groups and listening to and learning from other people with lived experience. This kind support has the potential to change the duration of the illness and the length of the recovery experience, and Butterfly is uniquely equipped to provide that. 

I feel so lucky that I can now replicate this in my peer support work with Butterfly, but we need more funding. More funding to reach more people across Australia, to employ more peer workers, and to ensure our services are always available. It sounds cliché, but it will literally change people’s lives.”

How you can help

Every year, the number of people reaching out to Butterfly’s Helpline over the holiday period is increasing. We’re here to provide resources and support for eating disorder recovery, but we can’t do it without you.

This festive season, we’re aiming to raise $50,000 to support our critical treatment and recovery services that can help people #QuietTheNoise of an eating disorder. You can help by donating today.

Donate now

Get support

Butterfly’s National Helpline counsellors are trained in eating disorders and body image concerns and can provide confidential and free counselling and advice, 7 days a week, 8am-midnight (AEDT).

Connect with Butterfly’s National Helpline on 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au

Support groups

Butterfly offers weekly support groups for people experiencing eating disorders and the carers. Available via webchat or virtually facilitated by peer workers like Rhiannon, these groups can provide skills and strategies for recovery and care. Connect with others in a safe space and feel heard and understood.

Butterfly’s Virtual Support Groups are facilitated by trained peer facilitators who have lived experience of an eating disorder themselves. Anyone over age 18 from anywhere in Australia is welcome to attend.

Our Webchat Support Groups are facilitated by specialist counsellors from our National Helpline. Anyone over age 16 from anywhere in Australia is welcome to attend.

We also offer In-Person Support Groups in Hobart, Tasmania. These groups are delivered by trained peer facilitators.