Advocate • Lived Experience with ME/CFS
Join Anne Wilson, CEO of Emerge Australia, as she welcomes Carolyn Merritt, a remarkable advocate and retired physiotherapist, to the Imagine Podcast. In this insightful episode, Carolyn shares her personal journey with ME/CFS and dysautonomia, offering a unique perspective on the impact of post-exertional malaise (PEM).
I don’t think I really understood how delayed PEM could be, nor how cumulative and dangerous it could be. It wasn’t until I completely crashed that I realised I had cumulative PEM sneaking up on me for some time and I hadn’t realised.
Through her four-decade career, Carolyn has witnessed the challenges faced by those living with chronic illnesses. Now, as a dedicated advocate, she sheds light on the often misunderstood PEM, highlighting its delayed and cumulative nature. Carolyn’s story is a powerful reminder that pushing through is not always the answer, especially for those with ME/CFS.
Society glorifies pushing through and soldiering on. There is a view that exercise is healthy and the best thing to do. This may be true for many, but it is not true for people living with ME/CFS – we just cannot push through.
In this authentic and poignant conversation, Carolyn discusses the societal pressures to ‘soldier on’ and the importance of self-awareness and pacing. She bravely shares her experiences with mobility aids, the struggle to overcome hardwired instincts, and the crucial role of support systems.
You’ve got to be so self-disciplined with pacing to live with PEM and you also need to have support to manage this – many people living with PEM just don’t have the supports they need.
Don’t miss this inspiring podcast, where Carolyn’s advocacy and personal insights will leave a lasting impression. It’s a must-listen during ME/CFS Awareness Week, as we raise awareness about PEM and the need for understanding and support.
We are grateful for Emerge Australia’s Ambassador Bloom sharing her rendition of John Lennon’s Imagine to open and close our podcasts.
