How Do We Manage Advocating For Our Own Health?
Tue Feb 03 2026
When we picture healthcare experts we might think of people like doctors, nurses, surgeons and neurologists. But what about the patients? Patients are able to give us so much insight into what our healthcare systems are really like; where they thrive and where they fail.
Tilly Rose describes herself as an ‘expert’ patient. She spent the best part of two decades trying to receive diagnoses for a whole range of debilitating symptoms. After the frustration of being told that her physical symptoms were ‘all in her head’ and being left on ‘comfort care’, Tilly and her mother took matters into their own hands, researched what they thought could be wrong and found the doctors who could diagnose her. The journey has taken them through hospitals in the UK all the way to Germany, and they are an incredible example of what can happen when you choose not to accept that you are simply a medical mystery.
Tilly’s example is an extreme one, but we should all be able to advocate for ourselves when we feel we aren’t getting the medical attention we need - no matter how small the symptom. In this episode she tells Stephanie about her journey, the issues with the UK healthcare system that prevented her from receiving a diagnosis, the gender health gap and being believed as a female patient, and what she thinks needs to change to make things better.
Resources & Links
Buy Tilly’s book ‘Be Patient’ here
Host: Stephanie von Bismarck
Guest: Tilly Rose, author of ‘Be Patient’
Producer: Holly Fisher
Production Manager: Angela Crago
Executive Producer: Ellie Di Martino
The series was recorded and edited at Pod Shop studios.
Follow @HowDoWeManage
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When we picture healthcare experts we might think of people like doctors, nurses, surgeons and neurologists. But what about the patients? Patients are able to give us so much insight into what our healthcare systems are really like; where they thrive and where they fail. Tilly Rose describes herself as an ‘expert’ patient. She spent the best part of two decades trying to receive diagnoses for a whole range of debilitating symptoms. After the frustration of being told that her physical symptoms were ‘all in her head’ and being left on ‘comfort care’, Tilly and her mother took matters into their own hands, researched what they thought could be wrong and found the doctors who could diagnose her. The journey has taken them through hospitals in the UK all the way to Germany, and they are an incredible example of what can happen when you choose not to accept that you are simply a medical mystery. Tilly’s example is an extreme one, but we should all be able to advocate for ourselves when we feel we aren’t getting the medical attention we need - no matter how small the symptom. In this episode she tells Stephanie about her journey, the issues with the UK healthcare system that prevented her from receiving a diagnosis, the gender health gap and being believed as a female patient, and what she thinks needs to change to make things better. Resources & Links Buy Tilly’s book ‘Be Patient’ here Host: Stephanie von Bismarck Guest: Tilly Rose, author of ‘Be Patient’ Producer: Holly Fisher Production Manager: Angela Crago Executive Producer: Ellie Di Martino The series was recorded and edited at Pod Shop studios. Follow @HowDoWeManage