Holding It All Together When You're Hypermobile: Achieve a Better Life Experience with EDS, POTS, and Joint Instability

by Christie Cox

A practical patient-perspective guide for dealing and healing with hypermobile Ehlers Danlos syndrome (EDS), POTS, and comorbidities.
Tired of being told there’s no 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? Maybe you've been dismissed by doctors and disbelieved by loved ones that your suffering is even real?
What if instead, there was someone who knew what you were going through and could teach you strategies for coping with rare 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 hEDS 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 mindsetA look at the latest scientific research on the edge of answersQ&A interviews with expert doctors and advocacy groupsGuidance for how to help loved ones better understand hEDSChristie’s own inspiring story of how she came to live her best lifeLessons, questions and quotes to inspire your search for answersEarly Advance Reader "Oh if I had something like this 12+ years ago, life would have been so much easier and so less stressful. I don't believe that there is anything like your book out there." "I get exhausted reading all the medically technical studies, etc, so I really think this will be helpful for many Zebras to digest, implement, and become more empowered as they apply the various tools you've suggested. Plus you've provided many links to things to allow for further investigation into various subjects. You've really done an amazing job putting this together!!"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. To learn more about Christie’s book, visit www.holdingitalltogether.com. If you want to learn more about Christie’s patient advocacy work, visit www.journey2joyous.com

Genres: Nonfiction, Health

336 pages, Kindle Edition

Published July 28, 2022

Reviews

[Christina · Rating 5 out of 5]

This is the book that I wish existed when I was first diagnosed and Im still glad to have as a reference. This may be a book better suited for the newbies in the Hypermobility community, but believe me, don’t pass on it just because you have been around the block a few times.
This is a book that has a little something for everyone. Give one to your doctor or physical therapist. Give one to your newly diagnosed friends and your expert friends. I love her take on everything and honestly feel like its the book I would have written if I had had a chance. Its full of wonderful explanations, personal stories, and coping strategies that, lets face it, we all need to hear once in a while even though we are constantly advising each other.
I have read a lot of these books and this is not one to pass on. Even if you already know 99.9% of the sentences, I guarantee there has to be at least one sentence that you needed to hear that day.

[Avi · Rating 5 out of 5]

Reading this book is akin to having a motivational coach by your side championing you through the hardest moments in your life. If you are one of those not-so-rare zebras afflicted by Ehlers-Danlos syndrome and its varied companions, like POTS, this book is a must read!! If you have a loved one who has this debilitating connective tissue disorder, this book is a lifesaver. If you or someone you love is living through any myriad of chronic illnesses this book has so many gems tucked into every page. If you are a caring and compassionate human who wants to live consciously, this book has something for you too! This book is relevant, hopeful, and filled with sage advice from someone who is living with EDS and POTS and a host of interconnected diseases. She is passionate about helping others suffering from chronic illness. This book is a crucial guide to help us all live a fuller and more empowered life.

[Literary Reviewer · Rating 5 out of 5]

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.

[Mercer · Rating 5 out of 5]

Clear, well-organized, thorough, and a perfect blend of practicality with positivity, Holding It All Together When You're Hypermobile: Achieve a Better Life Experience with EDS, POTS, and Joint Instability brims with light and is a much needed, invaluable resource for the zebra community.

I read this book not because I belong to its target audience but rather because Christie Cox is a personal friend of mine. That being said, I still walked away with a number of insights for my own self-care & wellness journey.

[Kristjan · Rating 4 out of 5]

A Helpful Guide to Living with a Chronic Condition
Performance: ***
Book: *****

This book is a balanced look at coping with hypermobile Ehlers-Danlos syndrome (hEDS) and the associated comorbidities; the latter being what drew me to it as I have friends and family with POTS and gastroparesis, which are very common along with EDS. Some have managed there condition well and others not so well … and this book seems like it would be a great help for both. Unfortunately many of the resources are imbedded within the text with a few being out of date; it would have been better putting them into the companion pdf (which was missing for my audible) or better yet a public resource list on author’s website (which is still live). Regardless, there is still quite a lot of value to this fairly personal story about the author’s journey to better health, making this book a combination of inspiration/motivation and useful advice/tips for adopting the lifestyle changes required to manage a condition that will never completely go away. That by itself make this a worthy read for anybody struggling with any of these conditions.

Each chapter starts with some description and/or definitions about some aspect of the how and why the symptoms are what they are before the author goes into her own experience with trying to manage those symptoms … and across the book it is clear that the author have tried a lot of things, both conventional and controversial. Each time she reinforces the fact that everybody is different and just because it worked or didn’t work for her, doesn’t guarantee the same for others … and that before starting anything, it is very important that you coordination with your health care provider team. Each chapter closes with a quasi summary of recommendations (assess, act, affirm) followed by one or more positive self affirmations to encourage those following along her journey to keep moving forward to obtaining a better quality of life (because this may take awhile to achieve, but it is possible).

The chapters and sections in this work are:
Introduction: Straight from the Zebra’s Mouth (17m)
Part I: One Patient’s Perspective
Chapter 1: My Story (17m)
Chapter 2: EDS and Me (25m)
Chapter 3: Comorbidities of EDS (29m)
Part II: Coping with EDS
Chapter 4: Dealing with Pain (51m)
Chapter 5: Navigating the Medical System (45m)
Chapter 6: Miracles of the Modern Mindset (33m)
Part III: Learning to Heal
Chapter 7: Mastering Stress (22m)
Chapter 8: Managing Autonomic Dysfunction (24m)
Chapter 9: Mindfulness and Meditation (30m)
Part IV: Healing Habits for your Body
Chapter 10: Movement (12m)
Chapter 11: Meals and Minerals (14m)
Chapter 12: Massage and Physical Therapy (13m)
Part V Healing Habits for Your Soul
Chapter 13: Make Time for Self-Care (31m)
Chapter 14: Maintaining Relationships (18m)
Chapter 15: Mustering Up Support (26m)
Conclusion Making It (18m)

I was given this free advance review/listener copy (ARC) audiobook at my request and have voluntarily left this review.

#HoldingItAllTogether #AudibleGiveawaysGoodRdsGrp

[Han Reardon-Smith · Rating 3 out of 5]

As someone recently diagnosed with hEDS after finally figuring it out myself and following many years of doctor ignorance and/or medical gaslighting, this book contained some helpful and validating info, but also plenty of opinion takes that I personally find fairly questionable. Plenty of the recommended resources are out of date (links etc.), and in general it’s not well edited—this likely speaks again to the poor recognition of this not-so-rare condition and the difficulty accessing appropriate treatment in colonial-capitalist medical systems (I’m based in so-called australia). It’s frustrating that there’s very little patient-friendly management guides or other publications to turn to. Some of the better info here was in the interviews with medical professionals who are committed to better understanding of connective tissue disorders, and I’d love to see more being published in this area by those folks. At the same time, given the relative dearth of such specialised care, it’s important that they continue to prioritise working with patients! A catch 22.

2.5/5, rounded up.

[Molly Socks · Rating 4 out of 5]

The author did a wonderful job compiling information, tips, and resources for those suffering with Ehlers-Danlos Syndrome, POTS, and Mast Cell Activation Syndrome. I really respected how she showed her sources and includes interviews she personally conducted with experts on the topic. My only complaint is that the beginning of the book was tough to push through as a newly diagnosed EDS patient. The first few chapters focused on the author’s health journey and background, what the diseases are, and problems that can arise because of the diseases. I understand the importance of educating the reader about the author’s expertise and the conditions she’s written about. However, I wish there were a little more hopeful/lighthearted moments mixed in to get me through that portion of the book.

[Megan Thomas · Rating 4 out of 5]

Loved how accessible this text was!

I discovered just this year that I am hypermobile and I have been doing my best to learn how best to manage the condition.

The clear and concise way Christie lays things out for her readers is amazing. The use of layman's terms and her ability to translate medical jargon into plain language was very helpful.

Definitely recommend this to anyone looking to learn more about hypermobility.

[Shannon Ferguson · Rating 3 out of 5]

Great overview for someone just starting out on their EDS journey

This book is two things: affirming and chaotic. But it’s lovely because that’s the nature of EDS — full-bodied chaos that health care providers are hesitant to see holistically. This book gives good antidotal accounts, decent resources, and ideas for managing the disorder.

[El · Rating 3 out of 5]

I'm not crazy about how this was written. For a book intended for chronically ill people, it was much too wordy and definitely too long. Plus the tone was surprisingly preachy for someone who claims to be a patient themselves.

[Katherine · Rating 5 out of 5]

Great resource for hEDS and related conditions.