The Voices of Hypermobility
by 
Ehlers-Danlos Syndrome (EDS) Awareness
Hypermobility and Ehlers-Danlos Syndrome (EDS) affect how the body moves, stabilizes, and responds to everyday activity. For some, this shows up early as joint pain, instability, fatigue, or frequent injury. For others, it may not become clear until later in life, often after years of unexplained symptoms.
At The Therapy Network, we see patients with hypermobility at many different stages of understanding their bodies. While symptoms may overlap, no two experiences are the same.
In honor of EDS Awareness Month, we are excited to share experiences from several patients at our Newtown clinic, including a mother and son who attend physical therapy together, as well as two additional individuals living with hypermobility. Each offers a different perspective on what it is like to live in their body, when they realized they were more than “just flexible,” and how physical therapy has been part of their journey.
We begin with their voices below.
Patient Experiences:
A Mother and Son – For M and L, hypermobility is something they share but experience differently.
Q: How would you describe what living with hypermobility feels like?
M: Painful, expensive, frustrating, complicated.
Painful – we have constant aches and pains.
Expensive – we require more medical appointments and a ton of gear to support our joints.
Frustrating – lots of experience with diagnostic overshadowing, along with time and money lost working with providers who don’t know how to treat it.
Complicated – it’s difficult to find knowledgeable professionals or those willing to educate themselves and discover common co-occurring conditions.
L: It feels mostly normal for me, although I’ve always had weaker muscles than my peers.
Q: When did you realize you were more than just “flexible”?
M: At age 40, after a herniated disk. My pain management doctors casually mentioned it as if I knew.
L: I never had a single defining moment. I always knew.
Q: How has physical therapy helped you?
M: I credit PT for my being in the best shape of my life and my decreased anxiety about future injuries or worries about finding someone who can help.
L: NO BACK PAIN!!!! 😀 I can sleep now! 🙂
Patient (B)
Q: How would you describe what living with hypermobility feels like?
B: It feels unstable and painful. I have a hard time trusting my body to do things or knowing if I have the strength to finish a task. Sometimes, I injure myself if I try new things because I haven’t practiced doing them or those joints aren’t strong enough.
Q: When did you realize you were more than just “flexible”?
B: As a kid, I was always pushed into dance and cheer because of my “flexibility,” but I was always in pain, and stretches never got easier or less painful. I wasn’t diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome) until I was 23.
Q: How has physical therapy helped you?
B: It has helped me reduce my injuries and maintain my current level of functioning. It also helps to have someone else release knots or trigger points when my home remedies do not work.
Patient (L)
Q: How would you describe what living with hypermobility feels like?
L: I’m constantly having to make adjustments to keep up with normal activities. I’m always sore and have musculoskeletal pain and joints falling out of place.
Q: When did you realize you were more than just “flexible”?
L: When you’re young, it’s all “party tricks,” but once you hit your early mid-20s, that’s when the pain starts. I figured out I was hypermobile through online communities.
Q: How has physical therapy helped you?
L: PT has helped tremendously to give me the ability to keep my pain under control. PT helped give me proper posture and gave me exercises to help when I’m at home.
What We Learn from These Voices
These stories are different in age, perspective, and experience, but they are connected by a shared reality of living with hypermobility and Ehlers-Danlos Syndrome. Each person’s experience is shaped by their symptoms, their history, and the process of understanding what their body needs over time.
What stands out most is that understanding hypermobility is not just about a diagnosis—it is about understanding the person living with it. It is something we learn through conversation, through listening, and through paying attention to how each individual moves, adapts, describes their pain, and finds relief. All of these details matter.
This is where care begins for us: listening closely to each individual experience and using that understanding to guide support that is truly personalized.
We are grateful to the patients who shared their voices. Their experiences remind us that while hypermobility and Ehlers-Danlos Syndrome can be complex, they are also deeply personal, and no two stories are ever the same.
And within that individuality, there is still progress, adaptation, and the possibility of feeling more supported in your body over time. If you are living with hypermobility or chronic pain and are looking for support, we welcome you to connect with our team at The Therapy Network – Newtown.
If you would like to learn more about hypermobility and Ehlers-Danlos Syndrome, we invite you to read our previous blog, Just “Flexible—or Something More?”, which explores what EDS can look like in everyday life, early signs of hypermobility, and Melissa’s personal experience as both a physical therapist assistant and someone living with hypermobility herself.
