I was born with a genetic condition that affects my collagen production—in essence, my body builds its structure with the equivalency of vines and flowers instead of an organized lattice. The result is a mix of greater than average flexibility (i.e hypermobility), joint laxity, frequent injuries, joint pain, food allergies, and a dash of dysautonomia. Over 15 years ago, before we had a proper name for what was going on, my practitioners and I jokingly named it Baby Giraffe Syndrome or BGS for short.

Early in life, the only apparent symptoms of a connective tissue disorder related to greater than average mobility, even for a kid. I grew up in a loving, active family and fell in love with movement early on. When I started ballet as a toddler, it fostered that love of movement and undoubtedly allowed me to gain control over my joint ranges of motion. My greater than average joint range of motion was a pretty significant asset for classical ballet. However, by my teens, joint pain, muscle aches, and injuries became constant companions. I couldn’t sit in a chair “normally” without discomfort- so I moved. A lot.

That love of movement came to a screeching halt in my teens, when my health deteriorated to the point where I couldn’t even go outside. While it was an incredibly tough time, it also sparked my fascination with the human body’s resilience. This led me to study Human Kinetics and, later, pursue a master’s degree focused on using exercise as medicine—particularly for hypermobile and neurological populations.

Throughout my life, I’ve learned to manage chronic pain, injury, and fatigue—not by giving up movement, but by getting smarter about it. I’ve spent the last two decades diving into every form of movement I could explore, both personally and professionally. I’ve worked with incredible mentors, studied widely, and coached clients through injury recovery and performance alike.

A formal diagnosis of hEDS (Hypermobile type Ehlers-Danlos Syndrome) helped me make sense of the long list of “cant’s” I’d been accumulating—things like running, lifting heavy, working long hours, socializing after a work day, or even tolerating weather changes without flares. It didn’t change who I was, but it gave me the language and understanding I needed to work with my body, not against it.

If this is my normal, there is no use wallowing in wishing things were different.

Little did I know that an even bigger injury shortly after diagnosis would provide a pretty steep learning curve. In 2017, a serious spinal and brainstem injury from burnout and a poorly timed very long bus ride forced me to slow down again and re-evaluate everything I knew about the body. I lost innervation to muscles, lost function of an arm, and was met with a whole new set of breathing and digestive issues.

To heal, I went back to learning how to turn my head, breathe and swallow (yes, to breathe), tolerate walking and explore accessible movements that could help me regrow nerves without further harm. I knew I would not return to training the way I had because too much of my training approach was still designed for a more collagen-typical human and training like that wasn’t going to solve any problems. It took years to regain function, but I emerged with a deeper respect for my limits—and the importance of sustainable choices.

It is important to remember that hEDS and HSD can be dramatically different from person-to-person and that even though I’m sharing a fraction of one of my scarier accidents, it doesn’t mean we are all doomed to experience the same. There are many pre-accident factors that would have changed my own trajectory as well! The context of someone’s environment, stress state, relationship to movement, general baseline health, and more will change injury potential and how symptoms are presented.

An injury is never “just” because we are hypermobile or brought on by just one specific event: The state we are in leading up to the final moment of harm contributes just as much to both the severity of the injury and the ensuing healing.

Today, I am informed by my lived experience and use my academic background and 20 years of coaching to help others understand their own bodies, build resilience, and find sustainable ways to move, heal, and thrive. I believe that recovery isn’t about “going back”, but is about moving forward with awareness, compassion, and curiosity.

For me, an hEDS diagnosis eventually brought mental relief and acceptance around why professionals kept telling me to slow down or stop certain activities forever:

• It gave me patience for what I still refer to as BGS flare ups, knowing that This Too Shall Pass and my choices influence change.
• It showed me that it’s not my fault but it is my responsibility.
• It allowed me to develop preventative strategies and to understand the signs I’d already pin-pointed as being cyclical.
• It proved that we can heal even if we lack the genetic code to recover and with that, we can positively influence our physiology.
• It kept me stubborn about certain goals but encouraged flexibility in my approaches and choices to improve my life’s outcome.
• It allowed me to communicate more clearly with loved ones vs. power through until I crashed to try to save face.
• It gave me a much deeper understanding of the body in a way that has helped my career more than purely theoretical knowledge alone could have.

Lastly, it broke my heart to know there were things I’d no longer be able to safely get back to experiencing. It took me years before I could watch a trail race or go see a ballet without feeling upset. More than anything though, it made me more grateful than ever for having had a chance to experience certain things at all.

Hypermobile or not, we all owe it to ourselves to understand how to care for our bodies in order to experience life as fully as possible. My capacity and capabilities have shifted but I refuse to make my world shrink out of fear of my own body. I hope you won’t let your world shrink either.