If there's one thing that people with chronic illnesses need, it's to know that they -- that we -- are not alone in our experiences. Sharing our stories enables us to connect; it helps us to feel seen, heard, and understood. Through these stories, we learn; we laugh; we love one another. We create a bond without ever meeting. We are in this together.
That's why I started my blog years ago, it's why I write my column for Sarcoidosis News, and it's why I created Kaleidoscope: Rare Disease Stories. If you've made it this far, then I think you'll enjoy reading the books below, too.
Kaleidoscope:Rare Disease StoriesTOLD BY THE PEOPLE WHO LIVE THEMKerry Wong, Float Like a Buttahfly
Kaleidoscope Rare Disease Stories is a collection of true, first-person stories from people around the world living with a variety of rare diseases. The writers in this book, like the rare diseases they live with, span all ages, ethnicities, genders, religions, and ability levels.
Each story shares an aspect of their experience: the journey to diagnosis, what they've learned, how they've grown, changed, and connected with others in the rare community, how they embrace life, and more. These rare warriors show strength, courage, creativity, humor, and so much more. They are living proof that even through the darkest of times, through the unthinkable, through the fear - there is always hope.
With a foreword by Karen Duffy Lambros, NY Times best-selling author of Model Patient, Backbone, and Wise Up, who lives with neurosarcoidosis.
Available now in e-book, paperback, and hardcover. Net proceeds from sales of this book will be donated to the National Organization for Rare Disorders (NORD).
Keeping It Real with Arthritis:Stories from Around the WorldEffie Koliopoulos, Rising Above RA
KIRWA brings together stories from over 100 individuals living with or affected by all different forms of arthritis (and I'm one of them!).
"Ranging from heartfelt, hopeful, motivating, and empowering, to heart-wrenchingly eye-opening, these stories shine a light on the realities of everyday life with arthritis and related conditions."
That's right - you know the crew: Dopey, Happy, Grumpy, Bashful, Sleepy, Sneezy, & Doc. At different times, we can feel every one of those - sometimes all at once!
But wait -- there's more!
Here are some other great books written by people with chronic illnesses for people with chronic illnesses:
FICTION (featuring chronically ill or disabled protagonists)
Cait Gordon (Various Authors)- Nothing Without Us
- Nothing Without Us Too
- A Chronic Romance Series:
- Butterfly
- Dragonfly
- Firefly
- The Sterling Sisters Series:
- Peridot
- Sapphire
- (Two more on the way)
- Empyrean Series:
- Fourth Wing
- Iron Flame
- Onyx Storm
- (Two more on the way)
NONFICTION
Christina Applegate
- You with the Sad Eyes: A Memoir
*Trigger warning: sexual assault
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
- Model Patient: My Life As an Incurable Wise-Ass
- Backbone: Living With Chronic Pain Without Turning Into One
- Wise Up: Irreverent Enlightenment from a Mother Who's Been Through It
- Lucky Man: A Memoir
- Always Looking Up: The Adventures of an Incurable Optimist
- A Funny Thing Happened on the Way to the Future: Twists and Turns and Lessons Learned
- No Time Like the Future: An Optimist Considers Mortality
- Disability Visibility: First-Person Stories from the Twenty-First Century
- What to Do (or Not Do) if You Know Someone with Sarcoidosis
Guest blog on Float Like a Buttahfly
- As My Joints Turn: My Autoimmune Soap Opera
Autoimmune Arthritis isn't the end of the world, it's just another way of living in the world.