I’m not a clinician, but friends often ask for my advice when they get sick or need help caring for a loved one. I’ve spent nearly 25 years mapping the terrain created by innovative patients, survivors, and caregivers, the rebels of medical care. I’m also a caregiver to elders. Along the way, I’ve collected books to loan when someone facing a health challenge asks me, “What do I do now?” Each of these five books was written for when you find yourself in the healthcare maze and need to borrow courage, sharpen your senses, and navigate as best you can.
I wrote
Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
Don’t bring flowers to a newly diagnosed friend, bring this book. The author, a four-time cancer patient, provides the questions we all should ask about diagnosis, treatment options, and getting the care we need from both loved ones and clinicians.
I love the fierceness and “been there” honesty that shines through on every page. Published in 2007, it is still the best handbook I’ve seen for navigating a devastating diagnosis.
Every year millions of Americans are diagnosed with cancer, stroke, HIV/AIDS, multiple sclerosis, ALS, and other life-threatening or life-altering diseases. When faced with a devastating diagnosis people must quickly understand the diagnosis, prognosis, and choose from several treatment options-while still in shock. AfterShock identifies the processes required to respond to a serious diagnosis, regardless of the specific disease.
Social psychologist Gruman offers practical advice in a 10-stage approach to making clear-headed, informed decisions about who to tell and when; how to get a second opinion or find the right doctor and hospital; where to find reliable online information and telephone…
The COVID-19 virus swept across the world like a hurricane, and 20 survivors of the storm gathered to share the lessons they had learned.
I love how this book centers on the experiences of people living with Long Covid who not only point out the inequities of our health systems but also give practical advice about getting a diagnosis, navigating care, asking for help, and contributing to research.
You don’t have to have Long Covid to benefit. Their wise advice applies to everyone.
The first patient-to-patient guide for people living with Long COVID - with expert advice and an afterword by the leading research scientist.
For people living with Long COVID, navigating the uncharted territory of this new chronic illness can be challenging. With over two hundred unique symptoms, and with doctors continuing to work toward a cure, people experiencing Long COVID are often left with more questions than answers. A support group in book form, The Long COVID Survival Guide is here to help. Twenty contributors - from award-winning journalists, neuroscientists, and patient-researchers to corporate strategists, activists, and artists - share their…
Caring for an aging relative is an incredible honor and, let’s be honest, an incredible burden. When I became the caregiver for an elder cousin, this book gave me the information and tools I needed to get him the best care possible and then, in the end, to spring him from the hospital so he could die at home, as he wished.
This is very much a medical guide written by a physician specializing in geriatrics and palliative care, and I love the detail she provides on both chronic and acute illnesses, as well as how to choose a care facility.
An indispensable, comprehensive reference for family caregivers.
Caregivers hold the key to the health, well-being, and happiness of their aging relatives, partners, or friends. The Caregiver's Encyclopedia provides you with all of the information you need to take the best care of your loved one-from making major medical decisions to making sure you don't burn out.
Written by Muriel R. Gillick, MD, a geriatrician with more than 30 years' experience caring for older people, this book highlights the importance of understanding your friend's or family member's overall health. With compassion and expertise, this book will help you "think like a…
Speak up. Ask questions. Be the squeaky wheel. Your life or the life of someone you love may depend on it. That’s the message of Josie’s Story. I could not put this book down even as I had to steel myself to turn the page sometimes, knowing that a tragedy caused by a medical error was at the heart of it.
Grief, the unreleased love for a child, compelled the author to demand–and accomplish–systemic change that has saved lives. Read it, weep, and know that you, too, have the power to shift the axis of medical care.
Ninety-eight thousand people die every year from medical errors, making it a leading cause of death in the United States, but the subject has long been taboo. All that changed with Josie. Sorrel King's eighteen-month-old daughter was badly burned by a faulty water heater in the family's new home, but was taken to the world-renowned Johns Hopkins Hospital, where she made a remarkable recovery. But as she was preparing to leave, the hospital's system of communication broke down and Josie was given a fatal shot of methadone, sending her into cardiac arrest. Within forty-eight hours, the King family went from…
My mom and I are competing to see who can give away more copies of this book; we love it that much. Both of us have been bedside caregivers for dying relatives and have seen firsthand how beautiful that process can be if people are prepared.
I love how the book is designed with nice, large print, lovely illustrations, and little snacks of insight sprinkled throughout in boxes and “fast facts.” This book is the essential What to Expect When You’re Expecting–but for death.
“A gentle, knowledgeable guide to a fate we all share” (The Washington Post): the first and only all-encompassing action plan for the end of life.
“There is nothing wrong with you for dying,” hospice physician B.J. Miller and journalist and caregiver Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”
Theirs is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an…
My book is an action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care.
Anyone who has fallen off the conveyor belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? On a personal level, anyone who wants to navigate the healthcare maze faster will want to become a health rebel or recruit someone to their team. On a systemic level, it is a competitive advantage to understand and leverage the power of connection among patients, survivors, and caregivers. Rebel Health is for anyone who wants to become the hero of their own health story.
My book is fantastical historical fiction about two characters who're wrestling with the monstrosity of their grief.
It takes you into London high society, where Ambrose tries to forget about how much he misses Bennett and how much he dreads becoming as cold as their Grandfather. It takes you to the family's country manor house, where Mattie isolates and old ghosts start to come out of the woodwork.
It's a story about loss and depression; it's a story about friends who don't let you walk through the valley of death alone.
Ambrose Bancroft returns to London society with his younger sister, hoping they'll leave ghosts of memory behind. They have only each other left. While Ambrose attempts to draw Mattie out, dragging her to balls and threatening to seek suitors for her, his sister recoils from his meddling. Finally, when Ambrose compels her to attend art class before she's ready, Mattie paints something horrific enough to banish them from society in public disgrace.
At Linwood Manor, Mattie and Ambrose aren't as alone as they think. Taking advantage of Mattie's desperate need to find freedom, a vanishing room lures Ambrose's sister into…
