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.
Posted in Interviews
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Holding It All Together When You’re Hypermobile
Posted by Literary Titan
Christie Cox’s life changed forever the day she fell asleep behind the wheel and rear-ended the car in front of her. This was the last of many times she found herself swerving due to unexplained drowsiness. After a lifetime of seeking answers as to why she seemed so accident-prone and being dismissed by one doctor after another, she finally had the answer to all her questions. The severe neck injury she sustained due to her car accident led to a battery of tests that gave a name to her condition. Cox now knew–she had hypermobile Ehlers-Danlos syndrome (hEDS).
Holding it All Together When You’re Hypermobile, by Christie Cox, is the author’s own story of her battle to find a diagnosis that accurately explained the chronic symptoms she experienced throughout her life. In this open, caring, and motivating piece, Cox gives hope to others who suffer from chronic disorders and are fighting what seems to be a losing battle when it comes to finding a physician they can trust, finally receiving an accurate diagnosis, and managing their own healing habits.
Cox provides readers with an intimate look at her own experience and explains in great detail what makes EDS so incredibly debilitating. It’s this type of openness and willingness to share personal stories that helps others suffering with the same condition know they are not alone. In addition, patients and family members of those with EDS can find, not only solace, but information about EDS. Cox goes out of her way to provide hope and reassurance to readers, and this is a welcome tone in a book that contains facts that could easily become overwhelming.
The list of calming and healing techniques Cox offers is extensive. This is one of my favorite parts of her writing. She goes out of her way to offer readers dozens of strategies for coping on their most challenging days. Meditation is an important part of the advice Cox provides. She helps readers both recognize when they need to try meditation and instructs them on the most effective techniques for their situation. Everything about her writing exhibits care and concern for her readers and fellow patients.
It is difficult to share deeply personal stories, especially those that deal with debilitating diseases and the struggles with medical diagnoses. Cox manages to do so with grace while broadening readers’ knowledge and giving them the hope they so desperately seek. I recommend Cox’s book to anyone who has been diagnosed with EDS or POTS or believes they may suffer from them. I also believe Cox’s story can provide immense comfort to family members and caregivers of anyone with a chronic illness.
Pages: 374 | ASIN: B0B7QGX5BD
Posted in Book Reviews, Five Stars
Tags: author, 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, self help, story, writer, writing