Monica shares her extraordinary journey through years of unexplained pain, repeated misdiagnoses, and a 20-month diagnostic odyssey that ultimately led to confirming that her symptoms were real, and that she was suffering from Craniocervical Instability (CCI), Chiari malformation, tethered cord syndrome and Ehlers-Danlos syndrome (EDS). What begins as a story of a healthcare system that repeatedly failed to recognise a rare condition becomes a powerful conversation about resilience, advocacy and finding purpose through adversity.

Monica speaks openly about losing her health, career and identity, while also explaining how she reclaimed control by becoming an advocate for rare disease patients. She discusses the realities of navigating insurance denials, undergoing an eight-hour neurosurgical procedure, living with permanent disability, and why she is passionate about improving awareness of the relationship between connective tissue disorders and menopause.

Throughout the conversation, Monica demonstrates remarkable optimism, showing how writing, visualization techniques and advocacy have transformed one of the darkest periods of her life into a mission to help others feel seen, believed and less alone.

The song that Monica chose is Man in the Mirror by Michael Jackson.

Carter lives with multiple conditions, and this episode is focused on two of them: Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). Carter’s story is one of quiet endurance, misdiagnosis, rediscovery, and ultimately purpose.

Born with classical EDS caused by a collagen gene variant, Carter spent two decades sensing “something wasn’t quite right” before receiving a diagnosis. Years of chronic pain, joint instability, GI issues, and nerve problems were compounded by mast cell symptoms that mimicked psychiatric illness – hallucinations, mood swings, anxiety.

We discuss the profound shift after Carter’s diagnosis and receiving the right treatment for MCAS: clearer thinking, emotional stability, and physical relief. Deeper than the physical symptoms, Carter speaks with wisdom about reclaiming selfhood and finding peace. He also reflects on discovering a community who understands him, and finding a purpose in advocacy.

Carter’s reflections on resilience, stigma in healthcare, identity, and hope are thoughtful and deeply human.

The song that he chose is Standing Outside the Fire by Garth Brooks.

Occipital Horn Syndrome is an extremely rare disease. David Rose is only aware of a few people living with this condition. It took him many years to be diagnosed accurately, although he had been told early on that his condition was similar to Ehlers Danlos Syndrome (EDS)*. In our discussion, David shares tips about how to look after your mental health and how to stay active when you have a rare disease. We also talk about the importance of communities, which have become more accessible through social media.

The song David chose is Mr Brightside by The Killers.

*If you want to learn more about Ehlers Danlos Syndrome, listen to episode 7 with Mackenzie Abramson.

Mackenzie knew something was wrong when two different breaks wouldn't heal properly. However, it took multiple opinions before a doctor recognized the symptoms of Ehlers Danlos Syndrome (EDS). She explains how it affects her body, her energy levels and her mental health. She also talks about two other conditions that affect her, postural orthostatic tachycardia syndrome and chronic fatigue syndrome.

The song Mackenzie selected is Fight Song by Rachel Platten.