Advocate • Lived Experience ME/CFS
In this podcast we meet Carly who is a courageous advocate and powerful voice for those living with ME/CFS and other chronic illnesses. With over three decades of personal experience, she has navigated a complex healthcare system, facing many challenges and barriers to safe and compassionate care. Her journey has included many healthcare interactions that left her feeling misunderstood and anxious.
There is grace in accepting the grief of my illness. My grief ebbs and flows, and when it peaks, I need to be able to sit with it and allow myself to come to a place of acceptance. I’m grateful to be in a supportive environment with my family – this makes such a difference.
Despite being diagnosed with ME/CFS in the 1990s, Carly’s condition was frequently overlooked or questioned by healthcare professionals, a pattern she still often experiences when seeking care. Carly’s story sheds light on the importance of educating healthcare providers about ME/CFS and other chronic conditions. She emphasises the need for healthcare professionals to be equipped with the knowledge to provide safe and effective care, ensuring that patients like herself are not dismissed or stigmatised.
It is clear from my lived experience that our tertiary institutions who are educating our health professionals are not teaching about ME/CFS.
Through her advocacy, Carly aims to raise awareness, challenge misconceptions, and improve the standard of care for people living with ME/CFS. Her resilience and dedication make her an inspiring figure, and we are delighted that she can share her experiences on the Imagine Podcast with Anne Wilson.
I am hopeful that our listeners can understand that very single piece of advocacy matters. Every piece of information you can share with a health professional helps them to improve their knowledge and possibly take this into their care with others.
We are grateful for Emerge Australia’s Ambassador Bloom sharing her rendition of John Lennon’s Imagine to open and close our podcasts.
