We are pleased to share the below personal stories and quotes that were shared with us as part of Lived Experience Awareness Day 2026.

Luca’s experience of being part of the Bodywhys Media Panel

‘My name is Luca; I’m twenty-one years old and I’ve struggled with anorexia. It isn’t who I am, it doesn’t define me but it’s something that has affected me. A few months ago, I joined the bodywhys media panel, it has given me such amazing opportunities. I will always be grateful for this. I struggled for years to accept I had an eating disorder, then for a long time I thought it would forever define me or that I’d never be to talk about that time in my life, this hasn’t been the case. Through seeing people share their lived experiences I’ve learned that struggling with an eating disorder isn’t a life sentence and that it doesn’t make me less of a person. Understanding that I wasn’t the only person navigating the challenges of recovery, or that people are experiencing recovery in so many different ways allowed me to feel comfortable and less alone during such a difficult and isolating period of my life. In seeing all these wonderfully brave people share their stories I felt hope; Hope that things would get better, hope that everything would be okay. As time passed, I wanted to share my story, initially it was so that people could find their own hopes in my words, but it grew into something different. It became a sign of how far I had come to crying over somebody suggesting I had an eating disorder to sharing how one affected my life. It wasn’t just telling a story to me or giving advice, but it was my freedom. I chose to talk so openly about eating disorders when years before I could(n’t) say the words without tearing up. The feeling I get when sharing my experience is like a rush of euphoria, it’s realising that I did something terrifying, I fought for my freedom and lived to tell the tale.’ 

Roisin on the power of lived experience connection in recovery

‘For me, finding a space to share my personal experience unlocked a sense of freedom from the loneliness that my eating disorder had created in me. I remember being overcome with emotion the first time I attended a support group, simply from the relief of realising that I was not alone. Hearing other people’s stories gave me hope, helped me to feel understood, and allowed me to develop a greater sense of compassion for other people, and ultimately for myself. Feeling heard, understood and represented is such a vital part of the work of an organisation like Bodywhys as it reminds people in recovery that the support they are receiving is centred on them, with the sole purpose of helping them to get well. Meaningful collaboration, to me, means feeling that your experience is not simply being collected, but genuinely listened to and valued. It means being able to contribute honestly, knowing that what you say can help shape the support available to others. When organisations listen meaningfully, I think that should be reflected in action whether that is in how services are delivered, how people in recovery are represented, or how their voices are included in decisions that affect them. Sharing lived experience can feel very vulnerable but having the space to talk [and contribute through my work] has helped alleviate a lot of the shame I carried for a very long time. It has given me greater confidence and a sense of autonomy over my own wellbeing that I didn’t have before. I feel less ashamed about my struggles, and that freedom to speak openly about them has, in itself, played a role in keeping me well today.’ 

Hannah on the impact of lived experience in treatment, recovery and beyond

‘In my five years of recovery and two years recovered from anorexia I have had plenty of time to consider and determine those key components that helped me find a reason to live again. From cultivating positive self talk to finding a purpose outside of my eating disorder, I have been fortunate enough to explore different avenues towards healing. I can say with confidence that by far the most effective contribution to recovery, in my experience, was connecting with others who understood what I was going through, and who genuinely wanted to get better themselves.  

For a bit of context; I had disordered eating from around 8 years old, which morphed into binging and purging throughout my teens before turning into full blown anorexia by the time I was 21. At 23 I was admitted to the hospital, quickly followed by a six month stay at a private inpatient facility. My time in hospital did more harm than good; during Covid times, I was unable to see anybody and so spent two months being force fed, yelled at by doctors and nurses for ‘taking up a bed just because of my stubbornness’, and dealing with the mental and physical repercussions largely alone. By the time I entered inpatient treatment, I was resolute in my belief that I could not get better. I wholeheartedly believed that I was simply  ‘damaged’ and that the problem was me. That I was wrong, and bad and that I needed to make myself as small as possible to both punish and protect myself. That’s the thing about eating disorders, they are full of contradictions. I was punishing myself so others may be less likely to do so, I was shrinking myself so I wouldn’t be a target for other people’s cruelty. Yet I was showing myself the very cruelty I was so afraid of. A fear of weight gain ruled over my life and kept me completely isolated from friends and family. The last thing I expected when going into treatment was bonding with a group of people who would change my life and prove that connection can truly heal even the deepest pain.  

What surprised me most about my time in treatment was the variety of people I met in there. During my six months I crossed paths with successful business women, a young man who played GAA, girls who had been abused in childhood, a young woman who was homeless, boys who found it difficult to express their emotions, and young women who just wanted to be beautiful. All of us so different, and yet we all shared a similar core belief; I am not good enough. Money didn’t matter, or career, external success did not take that inner pain away. We all shared that common thought, and while it may have been planted there via differing circumstances, that belief had decided to stick. Therapy session after therapy session was spent trying to unpack those thoughts, and in listening to the stories of others I realised that the problem didn’t lie within me like some kind of defect. We were all coping with a deep pain the only way we knew how. As weeks passed, and meals were shared, we formed a close bond and understanding of one another. Jokes were shared on the easier days and tears were shed on the hard ones. One by one we left the centre and those left behind watched as life began to unfold for them. When it was my turn to leave, I decided that I still wasn’t deserving of recovery and spent another 4 years stuck in the depths of my eating disorder. It took a loss in my family and an attempt on my own life to open my eyes and choose a different path. But even in those 4 years, I remembered those I had met with lived experience and reminded myself that there was another way. They were living proof of that  

Now 29 and recovered I find myself the listening ear to those struggling with eating disorders and other addictions. It is a part of my life that I cherish, in part because for years I shamed myself for the time I lost battling anorexia. I felt behind in life compared to my peers. But that time has afforded me an understanding of what it is like to face the deadliest mental illness and win. It has given me the compassion, the strength, and the education that can be used to help others overcome it.  

For those living with someone who is struggling with an eating disorder, I know it is an incredibly scary and overwhelming thing, to watch someone you love suffer in ways you cannot fully understand. Oftentimes, words aren’t needed to express that something is wrong; I often think of someone acting out when they’re upset and don’t have the words to explain what’s upsetting them. Acting out being the key words here- when words fall short, actions speak volumes. If you don’t know what the right thing to say is, show that you are there for them through what you do, I promise you that alone can make a huge difference. Please know that showing that person love (sometimes some tough love is needed too!), and support goes much further than you even realise. Cultivating space in which safety is abundant is vital. The internal world of someone with an eating disorder is often racked with anxiety and fear, so having a safe place in which to challenge these illnesses is key. Enough external safety can afford a space in which security can be built within, over time.  

For those battling an eating disorder themselves, please know that there is a way out. There is always hope. I have been in your shoes, I believed that I would be stuck in a cycle of fear and self-hatred for the rest of my life. If you had told Hannah even two years ago that she would be going out for dinners with her boyfriend, celebrating birthdays, and looking in the mirror without shame clouding her vision, I would have called you crazy. But it is possible. It’s messy, it’s painful, and it’s so very hard. There will be days where you cry out that you can’t keep fighting, that it’s not worth it, and that you just can’t do it anymore. When those times hit, remember that shame cannot survive when brought into the light. Your eating disorder wants you to be alone because alone it can control you and make that shame grow into an untameable beast. It can convince you that you can’t be helped, that you’re too much for others to handle. All of those things are a lie; you have nothing to be ashamed of, nothing to punish yourself over, nothing that is worth you putting your life in jeopardy for. I encourage you to reach out, to share what you’re going through and to find someone who has lived experience themselves. Connection will save your life, I know this because it saved mine.’ 

Elsa on sharing lived experience, raising awareness and challenging stigma

‘In sharing my story, I felt empowered and as though I could make a difference. I had many people with stories of their own, including family members and friends of those with an eating disorder, reaching out to me and thanking me for being so open. Organisations that create and nurture open spaces to discuss challenging and sensitive topics in the public eye, such as Bodywhys, are saving so many people in the darkest of hours, and I am beyond grateful and proud to have been a part of it.’ 

Conor on lived experience, recovery and hope

‘It’s a privilege to be able to share my own lived experience. In some sense, it means that the struggles I have faced have counted towards something positive, and that I can help pave the path for someone who is going through a similar journey. I have had conversations with many people about my own experience with anorexia in particular, and it has been incredibly fulfilling to help others make sense of the feelings involved, the eating disorder “voice” or dialogue, and most importantly, being able to provide that message of hope that recovery is possible! I have taken great comfort from the stories and experiences of others, cementing that feeling that none of us are going through this challenge alone. The stigma around mental health, particularly for males, remains as a barrier in these conversations, but thankfully we are making great progress in tackling that as a nation overall. For organisations, I believe that hearing the voice of lived experience is vital, and forming a treatment pathway or service built on these personal accounts ensures that no stone is left unturned. The combination of medical, clinical, academic and anecdotal evidence yields a service that leaves nobody behind!’