Advocate • Artist • Lived Experience with ME/CFS
On Severe ME/CFS Day, we’re proud to present an enlightened, heartfelt and empowering episode of the Emerge Australia Imagine podcast.
In this special conversation, Anne Wilson, CEO of Emerge Australia, sits down with Tracey Collins – a courageous advocate who has been living with ME/CFS for over 20 years, including the past four years with severe and very severe ME/CFS.
For sixteen years I kept being told the tests were normal, so I walked away thinking there’s nothing wrong. Just ignore the symptoms and keep going … Because I wasn’t believed or acknowledged as there being a problem for so long, I learnt to ignore every sign my body was telling me. Everything that wasn’t normal, I had to think was normal. Only once I really started to understand those things were real, that they weren’t normal, and they were the signs that my body was struggling, was I then able to stop making myself worse.
Tracey shares her personal journey, shedding light on the profound impacts of this invisible illness on her daily life. She discusses the challenges of accessing support and healthcare, highlights the urgent need for better and equitable services, and emphasises the importance of increasing public awareness and understanding of Severe ME.
Healthcare assumes we have the capability to engage with all these systems. But ME removes exactly the capacity those systems assume we have … ME doesn’t fit into our current systems where diseases are put into silos … How can we organise care around the patient rather than around the diagnoses? … We don’t need to invent a new model. We need to learn from models that already work for other complex conditions.
This episode is a powerful call to action for policymakers, healthcare providers, and the community to come together and support those living with the most severe forms of ME.
Rather than asking people with severe ME to carry hope, I’d like to ask the rest of society to carry responsibility … Quality of life shouldn’t depend on privilege or luck.
Join us for an inspiring conversation filled with hope, resilience, and a shared commitment to change.
We are grateful for Emerge Australia’s Ambassador Bloom sharing her rendition of John Lennon’s Imagine to open and close our podcasts.
