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

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 & Resources: Find all articles mentioned in this episode at bendybodiespodcast.com.

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Chapters:
00:00 Introduction and Welcome
00:49 Meet Tilly Rose: Author and Advocate
03:04 Tilly's Medical Journey Begins
05:04 The Turning Point: Diagnosis and Advocacy
07:27 Living with EDS and Vascular Compressions
20:02 The Role of Social Media in Tilly's Journey
21:36 Life After Diagnosis: Treatment and Recovery
24:33 Raising Awareness and Advocacy
29:46 The Importance of Support and Advocacy
30:02 Tilly's Message to the Medical Community
31:07 The Power of Social Media and Global Conversations
32:26 Tilly's Experience in Germany
36:14 Connecting the Dots: EDS and Vascular Compressions
39:38 The Link Between Vascular Compressions and EDS
40:11 A Surprising Post-Surgery Observation
41:48 The Unifying Diagnosis Theory
42:42 Generational Differences in EDS Impact
46:34 The Importance of Coaching in EDS
51:06 Navigating the Medical System with Rare Diseases
55:33 The Role of Support Networks
01:04:04 Raising Awareness and Changing the Medical Approach
01:07:08 Final Thoughts and Future Goals
01:17:15 Conclusion and Resources