Voices Across America

20 years to an EDS diagnosis, how it almost killed me, and what I’ve done with it

author, Christie Cox

Christie Cox

State: Texas
Congressional District: TX17

Diseases

Chronic Pain, Genetic Disease, Neurological Disease, Rare Disease

Issues and Challenges

Christie Cox has encountered: Access to Expert Providers, Copay Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Disability, Gaslighting, Invisible Illness, Job Insecurity / Loss, Social Security Disability

My Story

Once a marketing executive with a zest for challenges, I transformed into an advocate for a genetic condition I never knew was in our history. My journey with Ehlers-Danlos Syndrome (EDS) - a condition as common as 1 in 500 but often invisible in the eyes of the medical system - began not just as a personal battle, but as a crusade for awareness. Despite EDS being relatively common, securing a proper diagnosis can feel like a quest through an unforgiving labyrinth, taking over two decades for some, myself included.

Seventeen years of navigating through a maze of health issues and misdiagnoses - from autoimmune disorders to MS - led me to not only a personal revelation but also to the halls of the NIH. My condition spiraled to a critical point when I passed out driving, leading to two necessary cervical fusions that tethered my skull to my spine. This ordeal culminated in a six-week journey to a specialized medical university, marking a turning point in my life.

In this odyssey, I’ve endured more than just physical ailments. The losses are manifold: the independence I cherished, the career I thrived in, and even family relationships that faltered under the weight of disbelief. Misunderstood and at times dismissed, my struggles seemed invisible to the world.

Refusing to be silenced by my circumstances, I penned a book to echo the cries and whispers of those like me. It’s more than just a guide to coping; it's a beacon for those lost in the shadows of chronic illness. Through my writing, I chart the stages of grief that accompany chronic conditions like EDS, recently uncovering a sixth stage - a stage of meaning. This discovery isn't just about finding peace or making sense of the chaos. It’s about forging connections that replace the painful memories with purpose.

I learned that meaning is deeply personal and unfolds in its own time. It doesn't negate the loss nor does it promise immediate understanding. But it offers a glimmer of hope - that from the depths of personal despair can emerge a drive to help others, a mission that now includes supporting my daughter, who faces a 50% chance of walking this same rugged path.

Now, my life's work is to help others articulate their own stories of struggle and resilience. It’s a quest not just for healing but for a higher purpose, where even without traditional employment, I find a profound sense of fulfillment. Each narrative I help shape is a step away from sorrow and a step towards understanding that love and grief are indeed intertwined, each giving depth to the other.

As I continue to balance the scales between loss and acceptance, I remind myself and others: healing requires movement, and though we mourn the people we once envisioned ourselves to be, there is immense beauty and strength in embracing who we can still become.

My Motivation and Inspiration

I proudly advocate for patients with rare and chronic invisible illnesses, both in the local community, fundraising, elevating, and educating other patients and families with credible information. My favorite part is the in-person storytelling for better health advocacy on The Hill.

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