A Complex Multi-systemic Disorder
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.
Author Links: GoodReads | Twitter | Facebook | Website
Tired of being told there’s no name or treatment for your illness? That it’s all in your head or that your pain can’t be real because you’re too young/old/pretty/bright/healthy/normal to have a chronic disorder? Have you been dismissed by doctors or disbelieved by loved ones? What if instead, there was someone who knew what you were going through and could teach you strategies for coping with chronic illness?
This is not a false hope. You can turn pain into possibility with this life-changing book that can help everyone with elusive hypermobile Ehlers Danlos Syndrome (hEDS) – from those newly diagnosed to those who have suffered in silence for decades. Wherever you are on your journey navigating the complexities of chronic illness, you’re not alone.
In Holding It All Together When You’re Hypermobile, Christie Cox explores not only the physical effects of hypermobile Ehlers Danlos syndrome (a connective tissue disorder) but its emotional impact as well. As a fellow patient and medical rarity, known to doctors as zebras, she’s experienced her body’s betrayal and suffered through the myriad complications stemming from this disease. But she’s also found a way out from the depths of this life-altering disorder with wisdom you can turn into hope.
As a self-advocacy guide, she offers practical, no-nonsense advice about living with chronic illness and the concrete steps you can take to achieve a new normal. In her book, you’ll discover…A healing prescription for the miracle of the modern mindset
A look at the latest scientific research on the edge of answers
Q&A interviews with expert doctors and advocacy groups
Guidance for how to help loved ones better understand hEDS
Christie’s own inspiring story of how she came to live her best life
Lessons, questions and quotes to inspire your search for answers
Holding It All Together When You’re Hypermobile gives you the tools and resources you need to get back to living the life you want. Reading it will not only boost your confidence but empower you to change your life for the better.
The book was a “joint effort” of patients, providers, and advocates coming together to help an underserved community. Participants who were interviewed and shared in the book include:
EDS Medical SpecialistsDr. Sunil Patel, Neurosurgeon, Medical University of South Carolina (MUSC)
Dr. Chip Norris, The Norris Lab researching hypermobile Ehlers Danlos Syndrome (hEDS), MUSC
Dr. Cortney Gensemer, Norris Lab (has hEDS)
Dr. Amanda Miller, Progress Physical Therapy (speciality in hypermobility)
Dr. Eric Singman, Professor of Ophthalmology, Neuro-ophthalmologist, University of Maryland Medical School and Former Chief of the Wilmer Eye Institute at Johns Hopkins
Industry Leading AdvocatesLauren Stiles, President and Co-Founder, Dysautonomia International
Lara Bloom, President, The Ehlers Danlos Society
Dorothy Poppe, President, Bobby Jones Chiari & Syringomyelia Foundation
Gwenn Herman, Clinical Director, US Pain Foundation
Trisha Torrey, Founder, The Alliance of Professional Health Advocates
Camille Schrier, Miss America 2020 (who has EDS)
Ben Glass, Long-term disability lawyer, Ben Glass Law
To learn more about Christie’s book, visit http://www.holdingitalltogether.com.
If you want to learn more about Christie’s advocacy work, visit http://www.journey2joyous.com
Original source: https://literarytitan.com/2022/09/25/a-complex-multi-systemic-disorder/
Leave a Reply