Voices of Arizona: A Gilbert woman solves her own medical case by becoming a nurse

Elizabeth Lee of Gilbert spent decades navigating what she calls a broken and siloed health care system where she repeatedly encountered misdiagnoses and dismissive doctors. It took becoming a nurse for Lee to solve her own medical case, and she even discovered two extra sets of ribs.

In her professional life, Lee has worn many hats. She worked as an administrator in higher education before she became a nurse in reproductive medicine. That led her to patient advocacy and consulting, and now even politics.

But for almost as long as she’s been alive, Lee has been a patient.

“I grew up with unexplained pain. From the time I was around 5 years old I began having migraines, joint problems, exhaustion, beyond exhaustion, endometriosis — these other, all these sort of unexplained issues that were passed off as stress or growing pains,” Lee said. “Sometimes they told my parents 'you're kid has a weak constitution’ — what a thing to say. But I knew that there was something wrong and that it wasn’t my imagination. So for 30 years I carried that dismissal, completely convinced that the problem was me.”

Lee became a nurse for several reasons, one was to possibly solve her own medical mystery.

“By the time I became a nurse, I had learned how to read labs and how to connect dots and how to push back the medical gaslighting,” Lee said. “And so I was able to draft my own case.”

She took it to the Mayo Clinic.

“Luckily, I knew enough of the dots that needed to be presented to this doctor to see, and she instantly, it was a watershed moment, because it was like the sky opened and the puzzle pieces aligned finally,” Lee said.

Lee has a rare genetic disorder called Ehlers-Danlos syndrome. There’s no cure, and it affects what she calls “the glue that holds your body together.”

“So your genes code out your collagen and it’s built like a nice old hardcore piece of denim, like go Levi’s jeans, right,” Lee said. “My collagen gene is broken so it sends the wrong messaging instructions on how to build my collagen and therefore it causes thin, weak stretchy skin and same with your organs. And it’s all from your head to your toe.”

With a diagnosis in hand, she could then address the complications that come with her genetic disorder. Like the two extra sets of ribs she discovered while going through years of her old labs and imaging. Those extra pieces were inhibiting blood flow.

But Lee says with all of her knowledge and documentation, she still encountered doctors who dismissed her.

“'You don’t need to do anything about it. It’s fine, it's no big deal. … Your subclavian artery is starving for blood supply but you're solid,’” Lee said, recalling one physician’s assessment. “There’s many of those over my story, but that was one of those moments where I just was like instantly, ‘Nope, I know that is not correct.’”

A second opinion led to the removal of one of those extra sets doing the worst damage. Her arm was paralyzed in the process, but with occupational therapy, she’s since regained 80% of its function.

“And that’s really, that story [is] medical gaslighting,” Lee said. “You went from one saying, ‘Yes you have it, but it’s not a big deal,’ to ‘We need to take those out ASAP,’ which led to an adverse outcome.”

Now in her 40s, Lee says she wants an improved health care system that supports medical collaboration.

“Medical education, at least in this country, the way that we train physicians, there’s a lot of ego,” she said. “And physicians really struggle often to say, ‘You know what? I don’t know, but let’s go find someone who does.'”

Lee recently filed paperwork to run for Congress.