"I Didn’t Think I’d Dance Again": A Young Performer’s Journey Through Chronic Pain

When Lizzie Perez began experiencing unexplained pain in high school, everything she loved—dancing, performing, even just walking upstairs—suddenly felt out of reach.

Before chronic pain forced her to trade pointe shoes for lab reports, Perez was a self-proclaimed "theater kid." From the age of 7, she spent nearly every spare hour immersed in the world of dance and musical theater. “I was dancing probably 16 hours a week,” she says. “Tap was my favorite—it’s just so joyful.”

By sixth grade, her body began sending confusing and unwelcome signals. What started as knee pain—brushed off by doctors as simple growing pains—soon escalated into a widespread, persistent ache that moved through her joints like a fog she couldn’t escape. 

“My knees would be in severe pain; it felt like they would give out at any moment,” she recalls. “It was like I had aged 60 years.”

The pain began to unravel other parts of her life. She had to leave her beloved performing arts high school when the physical and emotional toll became too great. “They basically told me, ‘You are going to miss too much school—you cannot attend,’” she recalls. “It was heartbreaking.”

The diagnosis came later: hypermobile Ehlers-Danlos syndrome, a condition she shares with her father, whose own struggle with the disorder shaped her sense of what the future might hold. “He can't work, he can't go out and do things,” Lizzie says. “Once I learned what my condition was, I was terrified that that would be the life I would have to live.”

Lizzie’s care had followed a common path: lots of different providers trying different treatments, but no one pulling everything together. In 2023, anesthesiologist and pain specialist Dr. Amber Borucki stepped in and saw the bigger picture. “Lizzie had tried so many things, but it was all happening in silos—without a coordinated plan,” she said. “What she needed was a program that could help her put all the pieces together.”

That kind of structure and support is exactly what the Stanford Pediatric Pain Rehabilitation Program is designed to offer. Unlike typical outpatient care, which may involve multiple unconnected specialists, PReP brings multiple providers together—educational liaisons, nurse practitioners, occupational therapists, pain physicians, pain psychologists, physical therapists, program coordinators, and social workers—into one team working toward a shared goal: helping kids function better in daily life.

She also hopes more pediatric clinicians will know when it’s time to consider programs like this. “When traditional treatments aren’t improving a child’s function, it’s worth referring for an evaluation. Programs like this exist—and they work.”

A Long Road—and a Turning Point at Stanford

Healing didn’t come all at once, but the turning point began at the Stanford Pediatric Pain Rehabilitation Program (PReP). The team treated her pain as something manageable.

It was the first time anyone said: “Yes, this is real. And we can help.”

At Stanford, she joined a full-day outpatient program that brought together kids with chronic pain to follow a shared daily schedule. Each day blended physical therapy, psychological support, and occupational therapy—creating structure, building stamina, and helping her feel less alone in the process. At first, Lizzie said, it felt like boot camp. But each part of the five-week program helped her gain strength and control.

A Program That Met Her Where She Was

It wasn’t the program’s structure alone that made a difference—it was how deeply personalized the care was. Lizzie explained that in other healthcare settings, her physical therapy would often stall because her body didn’t cooperate predictably. Exercises that worked one week would become impossible the next when her shoulder shifted out of place, halting progress.

“We were able to change things when I needed them,” she said. “And it wasn’t getting rid of progress.” Instead of forcing her into a rigid plan, the team adjusted based on how her body was responding that day. That responsiveness allowed her to build momentum, not frustration.

The personalization extended beyond physical therapy. At the start, Lizzie was skeptical. Years of complicated and, at times, traumatic experiences with medical providers had left her guarded. “I gave them a hard time,” she admitted. But the team earned her trust. “After a week or two… I was talking to them like people, not doctors. I told them what they needed to know without focusing on the condition—and they could interpret what they needed from there. That made all the difference.”

“After a week or two… I was talking to them like people, not doctors. I told them what they needed to know without focusing on the condition—and they could interpret what they needed from there. That made all the difference.”

Even when it came to optional activities, the team listened. One common offering—visiting a therapeutic animal farm—wasn’t something Lizzie enjoyed. Rather than insisting she participate, they found other ways to engage her. She connected through cooking sessions, shopping, and even video games, played alongside another patient. These lighter, shared moments added joy to her healing process.

Empowered With Tools That Last

One of the hardest things was learning to push through her pain in a safe way. That meant doing physical therapy—even when it hurt. It also meant finding the right mindset. “You’re not told it’s all in your head. You’re told your brain is part of the pain process, and that’s different.”

“In programs like PReP, we focus on improving function rather than eliminating pain,” said pediatric pain psychologist Sara Williams, who worked closely with Lizzie. “It seems like a backwards approach, but by helping patients return to regular activities—even when it’s hard—we can retrain the brain and body to feel safe again. Over time, that’s what leads to pain relief.”

Importantly, the program also helped her reframe her own role in recovery. “The biggest thing was learning what I needed to do to get better at figuring out what works for me,” she said. That meant anchoring her day with the basics: three balanced meals, enough water, less caffeine, daily movement. These daily routines became part of her recovery—not magic solutions, but tools that helped her body feel steadier.

“I used to hate water,” she laughed. “But now I can drink 64 to 120 ounces a day.” These habits gave her a sense of agency. She knew what it looked like to feel good—and what to return to if she started to drift.

Dr. Williams remembers that transformation clearly. “Lizzie pushed through those early weeks when she felt all of the pain and none of the gain. Her ability to communicate, collaborate, and adapt turned the tide. She found new ways to achieve her goals—and built the momentum to sustain them.”

For others considering the Stanford Pediatric Pain Rehabilitation Program, Lizzie encourages openness—and patience. “Give it a real chance, even if it feels uncomfortable at first,” she said. “You might not like every activity, and that’s okay. Just try to stay open to the process.”

She also recommends speaking up. “Tell the team what’s really going on, even the stuff you think sounds weird or small. They don’t judge you—they use that information to help you.”

And perhaps most importantly: “Don’t expect to be ‘fixed’ in five weeks. What they give you is the foundation—you still have to build on it. But they’ll give you the tools, and they’ll teach you how to use them.”

A New Chapter: Back to Dancing, and Off to College

Today, Lizzie is dancing again. She’s currently performing in The Hunchback of Notre Dame—a musical filled with big movements, jumps, and choreography. Her body still gets sore, and she pulls muscles. But she knows the difference between short-term pain and the kind of pain that once took over her life.

“Three years ago, I didn’t think I’d go to college. I didn’t think I’d perform again. Now, here I am.” 

She’s also preparing for college, where she’ll study biology at the University of San Francisco. “Three years ago, I didn’t think I’d go to college. I didn’t think I’d perform again. Now, here I am.” She’s excited to be part of the Honors College, to explore new subjects—both expected and unexpected—and to someday travel abroad for a summer class.

Most of all, Lizzie is excited to just be. “I’m so excited to be a normal kid,” she said, then laughed. “Well, I’m 18. I don’t care—I’m still a kid.” She’s looking forward to finding friends, living away from home (but not too far), and seeing what the future holds.

“Every day I’m getting closer to the starting point of the new chapter,” she said. “And it’s just exciting—and, like I said, unreal.”