It’s Not in Your Head: Why Hypermobile Ehlers-anlos Syndrome Misdiagnosis Is So Common

If you’ve experienced Hypermobile Ehlers-Danlos Syndrome misdiagnosis—hearing “Have you considered that it might be anxiety?” while battling unexplained pain, dizziness, fatigue, or food reactions—you’re not alone.

Hypermobile Ehlers-Danlos Syndrome ( hEDS ) is one of the most common, yet least understood connective tissue disorders.

It affects joints, skin, blood vessels, the nervous system, and even digestion. But because it presents in so many different ways—and doesn’t show up on a standard blood test—patients are often told it’s all in their head.

Why Hypermobile Ehlers-Danlos Syndrome Misdiagnosis Happens So Often

As a former ICU nurse and scientist living with hEDS, I understand both the clinical and patient perspective. There’s no single test for hEDS. Unlike classical EDS (which has a known genetic marker), hEDS is diagnosed clinically—based on a combination of symptoms and medical history. That means doctors need to recognise patterns, and too often, they don’t.

Instead, they see:

• Anxiety or panic (when it’s actually dysautonomia)
• Depression (when it’s actually fatigue and chronic pain)
• Gastrointestinal issues (written off as IBS)
• Medication sensitivities (dismissed as being “dramatic”)
• Brain fog (labelled as stress)

And slowly but surely, the patient starts to doubt themselves.

The Diagnostic Delay Problem

Studies show that it takes an average of 10–12 years for someone with Ehlers-Danlos Syndrome to get an accurate diagnosis.

For hEDS, the delay can be even longer—because it’s not considered “rare” enough to get flagged by specialists, yet not well known enough for GPs to recognise.

Many patients go through:

• Dozens of referrals
• Repeated misdiagnoses (often psychiatric)
• Gaslighting
• A growing list of symptoms
• And eventually… a breaking point

The Overlap Confusion

Part of the challenge is that hEDS rarely travels alone. It often overlaps with:

• POTS (Postural Orthostatic Tachycardia Syndrome)
• MCAS (Mast Cell Activation Syndrome)
• Neurodivergence (like autism and ADHD)
• Long COVID or post-viral syndromes

This multi-system complexity makes it hard for one doctor to see the whole picture—which is why patients are so often passed around without answers.

Tracy’s Take: Lived Experience Matters

“As both a nurse and a patient, I’ve been on the receiving end of misdiagnosis for decades. I know how defeating it feels to be told it’s ‘all in your head’—and I also know how powerful it is to walk into a doctor’s office with clear, structured symptom evidence.”

You’re Not Imagining It

Your symptoms are real. Your experience is valid. And if no one’s put the pieces together yet—it doesn’t mean they don’t fit.

This is exactly why I built the  ConnectED Health App —to help people living with complex, underdiagnosed conditions like hEDS:

• Track symptoms across systems
• Find meaningful patterns
• Generate a structured report to support diagnosis and care

It’s not a diagnostic tool—but it helps make invisible symptoms visible, so you can advocate more clearly and confidently. For many, Hypermobile Ehlers-Danlos Syndrome misdiagnosis can delay care for years, but the right tools can change that.

Take Back Control

If you’ve experienced Hypermobile Ehlers-Danlos Syndrome misdiagnosis, it’s time to take back the narrative:

• Start tracking your symptoms
• Connect the dots
• Bring evidence to your next appointment

Download the  ConnectED Health App  today via the Apple App Store or Google Play.
You are not alone—and you are not overreacting.

Medical Disclaimer

This content is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified health provider regarding any medical condition.

FAQ

What is Hypermobile Ehlers-Danlos Syndrome misdiagnosis?

It’s when hEDS symptoms are mistaken for other conditions like anxiety, depression, or IBS, delaying correct treatment.

Why is hEDS often misdiagnosed?

Because it affects multiple systems and lacks a definitive test, symptoms can resemble unrelated physical or mental health conditions.

How long does it take to get diagnosed with hEDS?

On average 10–12 years, sometimes longer, due to low awareness among healthcare providers.

Can the ConnectED Health App help my doctor diagnose hEDS?

While not a diagnostic tool, it provides a structured symptom report to support the diagnostic
process.

What other conditions are linked with hEDS?

Common overlaps include POTS, MCAS, neurodivergence, and post-viral syndromes like Long COVID.

About the Author

Tracy Finnegan, RN, BSc is the Founder and Managing Director of ConnectED. A former ICU nurse and scientist, Tracy has lived experience with hEDS, POTS, MCAS, and Long COVID. After decades of misdiagnoses, she created the ConnectED Health App to empower patients to track symptoms, identify patterns, and advocate for accurate diagnoses and better care. Tracy brings firsthand experience, clinical expertise, and a patient-focused tool to support others.