What happens when you spend years being dismissed, misdiagnosed, and treated as a medical mystery?

In this episode of Owning Space, Aneka is joined by author and patient advocate Tilly Rose to talk about invisible illness, systemic failure in healthcare, and the power of patient advocacy.

After living with complex, multi-system symptoms for decades, Tilly was close to being discharged without a diagnosis. What followed was a turning point that changed everything, leading to life-saving answers, a global community, and a powerful new voice in women’s health.

This conversation explores what it means to be unheard, the emotional toll of misdiagnosis, and how advocacy, persistence, and collective knowledge can save lives.

A vital listen for anyone navigating chronic illness, medical gaslighting, or learning how to take up space within a system that too often overlooks women.

Tilly’s book, Be Patient, is available here

#WomensHealth #PatientAdvocacy #InvisibleIllness #ChronicIllness #MedicalGaslighting #Misdiagnosis #HealthcareInequality #PatientVoice #HealthJustice #BePatient #OwningSpacePodcast

Alex, Founder of Hypermobility HQ, joins me to talk about Ehlers-Danlos Syndrome, hypermobility and the realities of living with a connective tissue disorder. We explore the links between EDS, gut health, autoimmune conditions and ADHD, and why so many women with chronic pain, including those with endometriosis, are left unseen by traditional medicine. Alex also shares insights from her upcoming book Help! I’m Hypermobile and her belief that “incurable” does not mean “untreatable.”

If you’re curious to learn more about hypermobility, EDS and how these conditions connect across the body and mind, this episode is for you.

#EDS #Hypermobility #HypermobilityHQ #EhlersDanlosSyndrome #MedicalGaslighting #WomensHealth

Gabriella (Gabz) Pearson has lived with endometriosis, adenomyosis, fibromyalgia, hypermobility and ongoing assessments for PMDD and ADHD.

After six surgeries, including a recent hysterectomy, she shares her experience of being medically gaslit from childhood, masking pain, and navigating the decisions tied to fertility and identity. In this powerful conversation, Gabz opens up about the resilience it takes to self-advocate and the hope she’s found in community and advocacy through the Menstrual Health Project.

#Endometriosis #Adenomyosis #Fibromyalgia #PMDD #ADHD #ChronicIllness #MedicalGaslighting #Hysterectomy #WomenWithEndo #ChronicPain #InvisibleIllness #Hypermobility #WomensHealth #HealthAdvocacy #OwningSpacePodcast

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