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From Palliative Care to Purpose: The Tilly Rose Story (Ep 168)

From Palliative Care to Purpose: The Tilly Rose Story (Ep 168)

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 In this emotionally charged episode, Dr. Linda Bluestein talks with Tilly Rose, the founder of That Oxford Girl and the author of Be Patient, about what it’s like to face palliative care as a young adult and come out the other side fighting for change. They explore how Tilly transformed her private pain into public advocacy, why chronic illness is so often misunderstood in young people, and what happens when you rewrite your identity in the face of a diagnosis. This is a story of resilience, reinvention, and the radical act of showing up when the world doesn’t know what to do with you. Takeaways What happens when a diagnosis rewrites your life story and how can you reclaim the pen? Tilly shares the moment that inspired Be Patient and the raw honesty behind turning medical trauma into a memoir. Learn how she balanced life at Oxford with hospital stays and how those parallel worlds reshaped her idea of “achievement.” Why do so many young people with chronic illness feel unseen and what does Tilly believe needs to change? Discover how That Oxford Girl evolved from a quiet act of self-expression into a global movement of validation, empathy, and empowerment. Tilly reveals why sharing her story became both a lifeline and a catalyst for a more compassionate future. References: Order “Be Patient” by Tilly Rose (free international shipping): https://blackwells.co.uk/bookshop/product/Be-Patient-by-Tilly-Rose/9781780726229 Vascular Compression Syndromes: https://scholbach.de/wissenschaft/deutsch-ultraschalldiagnostik/deutsch-gefaskompressionen#gsc.tab=0 Greater National Advocates: https://gnanow.org/ Surgical treatment of abdominal compression syndromes: The significance of hypermobility-related disorders: https://pubmed.ncbi.nlm.nih.gov/34747562/ Want more Tilly Rose? https://www.instagram.com/thattillyrose/?hl=en https://www.facebook.com/people/Tilly-Rose-Author/61575923876707/?_rdr https://www.linkedin.com/in/tillyrose/?originalSubdomain=uk https://www.tiktok.com/@thattillyrose?lang=en Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices
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