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'm working on the Kaleidoscope series now. If you've made it this far, then I think you'll enjoy reading the books below, too.
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| Keeping It Real with Arthritis: Stories from Around the World |
Keeping It Real with Arthritis:
Stories from Around the World
Effie 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."
For my entry, I wrote about how having arthritis is like living with the seven dwarves of Disney fame.
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! To read over 100 more great stories, visit keepingitrealwitharthritisbook.com to order your copy.
Here's one I'm working on now, that YOU can be a part of:
Kaleidoscope
Rare Disease Stories
Told by the people who live them.
Join the kaleidoscope of rare voices.
Your story matters. Your voice matters. YOU matter. And you are not alone.
We've all had moments when we felt lost, angry, or scared on our rare disease journey. But we've also felt loved, supported, and hopeful. This is our opportunity to bring some of that warmth to others living with rare diseases.
Now, I invite you to share your story with the rare disease community and the general public in the upcoming book. Learn more at bit.ly/kaleidoscoperare.
Coming soon ...
The Good, the Bad, & the Ugly eBook
Using real-life interactions to improve patient-rheumatologist in office communication
Far too often, people with autoimmune or autoinflammatory forms of arthritis (AiArthritis) leave our rheumatology appointments feeling frustrated, depressed, or downright angry. Often this comes down to a problem with communication. Led by a committee of volunteers and staff living with AiArthritis, we'll be collecting your stories and putting our heads together with a number of rheumatologists to identify those communication gaps and see how we can improve that communication, and thus improve our experience as patients (and doctors).
I'll post a submission link here when it's ready. In the meantime, learn more at aiarthritis.org/GBU.
More Recommended Reading:
Here are some other great books written by people with chronic illnesses for people with chronic illnesses:
Suggestions? Email me at floatlikeabuttahfly@gmail.com.
