The best books on patient/family experience and advocacy in healthcare

This is an enlightening memoir recounting the story and journey of experiencing and recovering from a stroke. I love this book because it uniquely combines perspectives of the author being a researcher (neuroscientist), patient (experiencing the stroke), and just a common person with a normal life - which was turned upside down by the stroke. The author walks you through the arduous physical and emotional roller coaster of recovery, a few neurons at a time. The human brain candidly expressing what happened to itself, is a marvelously fascinating concept that you get to learn by reading this book.

Imagine being a medical school student in the best of health and full of spirit and ambition, and suddenly being engulfed by a strange and mysterious illness that even the best of doctors in the most renowned hospitals are unable to appropriately diagnose, let alone treat. This chilling story of a doctor who literally chases his own cure is a great example of the much-needed patient advocacy that may often be required to diagnose and treat rare and complex conditions effectively. The author’s passion for finding the underlying cause of his disease (Castleman’s disease) and experimenting with innovative unlikely combinations of drug therapies makes his story memorable and truly inspiring.

Every once in a great while, something remarkable happens and lets us learn about life in a different dimension than what we are used to. This book is penned by an author who is a neurosurgeon and who had a near-death experience upon falling critically ill with meningitis. I love this book because of the author’s ability to use his profound knowledge gained by his own near-death experience to unravel the deepest and most insightful meaning of life and its secrets. The lessons learned from the author’s own experience of the fusion of the spiritual and scientific self is well explained. The book is also unique from a point of view of the author being vulnerable enough to reveal his personal life and how his past played a role in the experiences during the 7-day coma and recovery from it.

Breast cancer has become ubiquitously one of the most common and dreaded cancers among women. Through this book, the author authentically and innovatively advocates for patients like her, who are diagnosed with breast cancer. She describes her journey in detail in an attempt to guide and advise others on how to deal with and manage life in the face of such a deadly diagnosis. While patients may be overwhelmed by the medical management aspects of the disease, the author reminds us to keep the human and psychological aspects in mind as a patient is after all a human being with emotions at the core.

This book is near and dear to me because of the topic it is based on. Anorectal malformation is a rare congenital defect that affects one in 5000 babies born. The book does a great job of bringing to light the real-life stories and experiences of patients and their families as they learn to navigate the healthcare system while aiming for the best outcome for their babies. The book gives a platform for raising awareness of birth defects such as anorectal malformations and tries to overcome the stigma associated with them. The book is a great compilation of stories of patients with anorectal malformations and serves as a great resource for other patients faced with a similar diagnosis.