Bending But Breaking: Understanding Hypermobility Disorders (HSD & EDS)

Invisible illnesses with very real impact 

Imagine a body that bends more than most, but breaks more easily too. A body that looks “normal” on the outside, but inside feels like it’s unravelling. This is the daily reality for many living with Hypermobility Spectrum Disorder (HSD) or Ehlers-Danlos Syndromes (EDS), two of the most underdiagnosed and misunderstood chronic conditions in the invisible illness world. 

Though often brushed off as being “just flexible,” these conditions go far beyond party tricks. They affect connective tissue, the glue that holds the body together. And when that glue isn’t working as it should? It impacts everything. 

Let’s break down what these conditions are, how they show up, and why awareness and validation matter more than ever. 

 

🔍 What Are Hypermobility Spectrum Disorder (HSD) and Ehlers Danlos Syndrome (EDS)

Both Hypermobility Spectrum Disorder and Ehlers-Danlos Syndromes are conditions that affect connective tissue, the body’s structural support system found in skin, ligaments, joints, blood vessels, and organs. 

• HSD is a diagnosis given when someone has symptomatic joint hypermobility that causes pain, instability or other issues, but doesn’t meet the full criteria for EDS. 

• EDS is a group of 13 related genetic connective tissue disorders. The most common is Hypermobile Ehlers-Danlos Syndrome (hEDS), which shares much overlap with HSD. 

Despite different labels, the lived experience of HSD and hEDS can be remarkably similar and both deserve attention, support, and proper care. 

 

 

📋 Common Hypermobility Symptoms 

These conditions present differently in each person, but here are some of the most common and often overlooked signs: 

• Joint hypermobility (bending joints beyond normal range) 

• Joint pain and instability (frequent sprains, subluxations or dislocations) 

• Chronic musculoskeletal pain 

• Fatigue and reduced exercise tolerance 

• Soft, stretchy, fragile skin 

• Poor wound healing / easy bruising 

• Dizziness or fainting (especially when standing) 

• Digestive issues like bloating, nausea, IBS 

• Frequent injuries, clumsiness, or poor proprioception 

• Early onset osteoarthritis 

• And SO many more 

Living with these symptoms can be frustrating and exhausting, especially when they fluctuate, are invisible to others, and often dismissed by health professionals. 

 

🧩 Comorbidities: Related Conditions Often Seen in Hypermobility Patients

Because connective tissue is everywhere, so are the ripple effects. Many people with HSD/EDS also live with co-occurring conditions, including: 

• Dysautonomia (especially Postural Orthostatic Tachycardia Syndrome - POTS) 

• Mast Cell Activation Syndrome (MCAS) 

• Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (ME/CFS)

• Irritable Bowel Syndrome (IBS) and Gastroparesis 

• TMJ dysfunction and migraine 

• Anxiety (often from years of not being believed or accommodated) 

• Pelvic floor dysfunction, bladder issues and prolapse 

These comorbidities add complexity to the diagnostic process and can worsen quality of life if not identified and managed. 

 

🧬 How to Get a Hypermobility Diagnosis

Getting a diagnosis of HSD or EDS can be a long, winding road. It’s not uncommon for people to go years, even decades, without answers. 

Diagnosis is typically based on: 

• Detailed medical history 

• Beighton Score (measures joint flexibility) 

• Symptom criteria (for hEDS) 

• Exclusion of other causes 

• Genetic testing (for some rarer types of EDS) 

There is currently no genetic test for hEDS, which makes diagnosis more subjective and frustrating. If you suspect you or a loved one may have HSD or EDS, seek out professionals experienced in connective tissue disorders or ask your GP for a referral to a rheumatologist or clinical geneticist. 

 

🛠️ Practical Approaches to Managing Hypermobility Spectrum Disorder & Ehlers-Danlos Syndrome

There is currently no cure for HSD or EDS, but with the right education, management, and support, quality of life can significantly improve. Key components of care include: 

🔹 Pacing & fatigue management 

 Energy is limited, and overdoing it can lead to crashes or injury. Activity needs to be balanced with rest and recovery. 

🔹 Exercise physiology or physiotherapy 

 Guided movement to support muscle tone, joint stability and function. Focus is on low-impact, joint-safe exercises and postural control. 

🔹 Occupational therapy 

 To support daily activities, joint protection, pacing, sensory sensitivities, and adaptive strategies. 

🔹 Pain management 

 Multimodal approach: heat/cold therapy, medications, massage, pacing, and nervous system regulation. 

🔹 Dietitian input 

 Helpful for those with digestive issues, MCAS, or nutrient absorption challenges. 

🔹 Mental health support 

 The emotional toll of living with an invisible and often dismissed condition is real. Validation and coping strategies are key. 

🔹 Supportive devices 

 Bracing, compression wear, orthotics, and mobility aids can protect joints and improve independence. 

 

🎗️ The Importance of Hypermobility Awareness in Healthcare

Too many people with HSD or EDS are told: 

• "You're just flexible." 

• "You're exaggerating." 

• "It’s all in your head." 

• "You look fine." 

And yet, they live every day navigating pain, injury, fatigue and a medical system that often doesn’t understand them. 

Raising awareness of these conditions doesn’t just help with faster diagnoses, it brings validation, community, and hope to those who have felt alone in their journey for far too long. 

 

💬 Final Thoughts

HSD and EDS are more than flexible joints, they’re systemic, invisible, and often life-altering conditions that affect every part of the body and every part of a person’s life. 

With understanding, appropriate support, and informed healthcare, people with HSD and EDS can thrive, even if their journey looks a little different. 

At AHC, we’re proud to walk alongside our community navigating HSD, EDS, and other invisible illnesses. Whether you’re newly diagnosed, still searching for answers, or supporting a loved one - we see you. We’re here for you. 

Together, we can make invisible illnesses visible. 

 

🔗 Want to learn more or access support? 

 We recommend checking out: 

• The Ehlers-Danlos Society: www.ehlers-danlos.com 

• Hypermobility Australia: www.hypermobility.org.au 

• Our clinic resources, programs, and education content tailored to HSD/EDS & comorbidities 

✨ If this blog resonated with you, share it to help raise awareness. Let’s keep bending perceptions and building a stronger, more compassionate world. 

 

Let’s make the invisible visible, together.

As always, sending love & spoons,
Raeya, COO of AHC