The Back Story

Hi. My name is Elizabeth. Behind the smile you see above, I live life in constant pain.

 For as long as I can remember, pain has been a constant companion. Headaches, fatigue, joint instability, dizziness—my life was a patchwork of symptoms that no doctor seemed able to stitch together into a cohesive diagnosis. I sought help from the nation’s most respected medical institutions—Johns Hopkins, the Cleveland Clinic, and countless specialists—but always left feeling frustrated, with no answers and no real improvement. I was living with an overwhelming amount of suffering, and the medical system seemed to have no clear path forward.

Everything changed in December 2019, when I sought an opinion from the Mayo Clinic in Phoenix, Arizona. It was a leap of faith after years of disappointment, but something in me still hoped that this time, someone might see the bigger picture. Little did I know that this visit would set off a chain of events that would finally unlock the mystery of my pain.

The Beginning of Clarity

At my first appointment with a Mayo neurologist, something felt different. She looked at me not as just another “headache patient” but as a whole person, with a complex history that needed to be unraveled. I handed her my exhaustive list of symptoms: not just headaches, but joint dislocations, unexplained bruising, dizzy spells that led to fainting, and severe fatigue that left me drained of energy most days. These were issues that I had brought to countless doctors before, only to be dismissed as unrelated or insignificant. This time, they weren’t ignored.

The neurologist instantly suspected something more systemic was at play. Over the next several months, she initiated a series of tests to explore the root of my symptoms, beginning with an Autonomic Reflex Screen. The results were definitive: I had dysautonomia, a condition that disrupts the autonomic nervous system, which controls involuntary bodily functions like heart rate, blood pressure, and digestion. Dysautonomia explained the dizziness, the fainting spells, and the overwhelming fatigue.

But it wasn’t the whole answer. My neurologist kept pushing for more, trying to fit together the puzzle pieces of my various symptoms. I underwent a spinal tap, which revealed that my spinal fluid pressure was lower than normal. This led to a more advanced test—a Fluoroscopic CT Cisternogram—that ultimately confirmed that I had a chronic cerebral spinal fluid (CSF) leak. It was a revelation that brought a mixture of relief and frustration. On one hand, I finally had an explanation for the daily pounding headaches, the nausea, and the unrelenting neck pain that plagued me. On the other hand, the solution wasn’t straightforward. Fixing a CSF leak is complex, and even with the diagnosis, it became clear that finding the exact source of the leak would be an ongoing battle.

The Ehlers-Danlos Breakthrough

As the months passed, another key piece of the puzzle fell into place. The Mayo neurologist, seeing the connection between my symptoms, referred me to a geneticist to investigate the possibility of a connective tissue disorder. After a thorough examination, I was diagnosed with Ehlers-Danlos syndrome (EDS), a genetic condition that affects the body’s connective tissues, leading to hypermobility, joint instability, and a host of other symptoms that I had lived with for decades.

Finally, it all made sense. The falls, the dislocations, the unexplained bruising, and even the chronic CSF leak—everything was linked to Ehlers-Danlos syndrome. For the first time in my life, I had a diagnosis that validated my lived experience. The pain I had endured wasn’t a figment of my imagination or a series of unrelated issues. It was part of a larger, interconnected condition that had gone undiagnosed for most of my life.

The Struggle for Treatment

While these diagnoses were empowering, they also came with a heavy weight of uncertainty. My CSF leak required further investigation, and after several failed epidural blood patches, I found myself traveling to the Mayo Clinic in Rochester, Minnesota, to meet with one of the world’s leading experts in CSF leaks. Despite their best efforts, the doctors couldn’t isolate the leak. I fell into the unfortunate 30% of patients whose leak cannot be precisely located. The news was crushing. I had come so far, only to be left once again in a state of limbo and despite now having had these diagnoses for five years, there’s still more questions than answers.

Why The Empowered Choice Coalition Exists

While there’s a lot more to it, just a glimpse into my my experience navigating the healthcare system—years of misdiagnosis, dismissal, and fragmented care—it all has shaped my vision for The Empowered Choice Coalition. I founded this organization because I believe that every patient deserves the same opportunity I finally had: to be seen, to be heard, and to be treated as a whole person.

The reality is that too many patients, like me, fall through the cracks of a disjointed medical system. They are shuttled between specialists, given conflicting advice, and left without clear answers. This is particularly true for conditions that are complex, multi-systemic, or poorly understood—like Ehlers-Danlos syndrome and dysautonomia.

At The Empowered Choice Coalition, we are committed to empowering patients with the knowledge, resources, and support they need to navigate their own healthcare journeys. We believe in advocating for integrated care, where medical professionals work together as a team to provide comprehensive and coordinated treatment. Most importantly, we believe in the power of education—ensuring that patients and healthcare providers alike are equipped with the information necessary to make informed decisions.

My journey to diagnosis took decades, but I hope that through this work, others won’t have to endure the same struggle. Together, we can create a healthcare system where every patient has access to timely, accurate, and compassionate care—a system that empowers them to make the choices that are best for their health and well-being.

Let’s do this together,

Elizabeth Lee

Founder of The Empowered Choice Coalition