A Complex Multi-systemic Disorder
Posted by Literary Titan
Holding It All Together When You’re Hypermobile explores the physical effects of hypermobile Ehlers Danlos syndrome, its emotional impacts, and provides readers with a prescription for healing. Why was this an important book for you to write?
I struggled for 17 years to find the correct diagnosis for unrecognizable chronic health conditions. I wrote the book so other patients wouldn’t have to do the same. To be able to find answers without dismissive providers discounting their physical and emotional pain was the driving force.
What is a common misconception you feel people have about EDS?
Most people have never heard of EDS unless you know someone impacted. It used to once be thought of as rare. But scientists at MUSC working on it now say it affects 1 in every 500 people so it’s not rare, but rarely diagnosed. Getting the right diagnosis for a complex multi-systemic disorder is challenging in our US healthcare system of siloed practioners. No one is looking at you hostistically. Medical schools aren’t teaching about connective tissue disorders or mention it in one paragraph of a lesson. Patients often have to crowdsource their care to connect the dots. In fact, some medical providers do not yet believe hypermobility is a real diagnosis and write patients off as it being in their head. The misconception is we are just double-jointed and flexible on the outside but what people don’t realize is all of the elasticity is going on in every level within our bodies affecting veins, muscles, joints, and organ systems simultaneously. That often is a very painful and debilitating process.
What were some themes that were important for you to explore in this book?
Self-advocacy and empowerment are vital to waging any war on disease. Yet slowing down to take care of yourself fully is also important. The two are not always aligned with each other. We often face cycles of boom and bust where we overdo it on a good day – only to need recovery time from any sort of exertion. EDS is an invisible illness. We might look normal and even seem capable on one day or week, then quietly fall apart. It is a difficult rollercoaster ride not on physically but emotionally. I wanted to offer inspiration and hope to others along with practical suggestions on exactly how to cope with those challenges.
What is the next book that you are working on and when will it be available?
I hope to write more on the autonomic nervous system within the human body and how we can utilize practical tools for calming down the chaos of chronic illness from within. “Dis-ease” is a state we should not get comfortable living in and is too commonly found today. I also hope to create more materials to support other patients better advocate for themselves withing the constraints of our existing medical system for better outcomes.
About Literary TitanThe Literary Titan is an organization of professional editors, writers, and professors that have a passion for the written word. We review fiction and non-fiction books in many different genres, as well as conduct author interviews, and recognize talented authors with our Literary Book Award. We are privileged to work with so many creative authors around the globe.
Posted on September 25, 2022, in Interviews and tagged author, author interview, biography, book, book recommendations, book review, book reviews, book shelf, bookblogger, books, books to read, Christie Cox, ebook, goodreads, health, Holding It All Together When You're Hypermobile, indie author, kindle, kobo, literature, memoir, nonfiction, nook, novel, read, reader, reading, story, true story, writer, writing. Bookmark the permalink. Leave a comment.
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