When Hypermobility is Misdiagnosed
Few things are more unsettling than being told your very real symptoms are imagined. Yet for thousands of people with hypermobile Ehlers–Danlos syndrome (hEDS), that’s exactly what happens. Their persistent pain, joint instability, fatigue, and other debilitating symptoms are often dismissed as stress, anxiety, or even attention-seeking behavior. The result? Delayed treatment, unnecessary suffering, and a long path to getting answers.
Lots of people are naturally flexible -- kids, dancers, gymnasts, and anyone who can bend and stretch beyond the “typical” range of motion. This general joint hypermobility isn’t unusual and often isn’t a problem. But when that flexibility is accompanied by chronic pain, frequent joint dislocations, extreme fatigue, or other systemic symptoms, it points to something more serious: a connective tissue disorder known as hypermobile Ehlers–Danlos syndrome.
Unlike other chronic diseases, hEDS currently has no genetic test. Diagnosis relies on a detailed physical exam, patient history, ruling out other conditions, and identifying patterns that many clinicians simply aren’t trained to recognize. That lack of awareness has led to staggering rates of misdiagnosis.
The Cost of Not Being Believed
One study published in ADDitude Magazine revealed the scope of the problem:
- 94% of people with hEDS were wrongly told they had a mental health condition
- 88% were told they were “making up” their symptoms
- Many had their joint pain, swelling, and chronic discomfort written off as anxiety, depression, or weight issues
These aren’t isolated stories. Patients report spending years searching for answers while their condition worsened and their confidence was eroded.
A review published by the National Center for Biotechnology Information looked at the charts of 429 patients diagnosed with hEDS between 2010 and 2018. Researchers found 94.4% were misdiagnosed with a psychiatric disorder. Only 5.6% avoided misdiagnosis. Patients also reported being:
- Told they were making up symptoms: 88%
- Labeled attention-seeking: 76%
- Diagnosed with conversion disorder: 67%
- Told it was “all in their head”: 60%
- Accused of Munchausen syndrome or factitious disorder: 4%
These labels didn’t just minimize their suffering -- they often delayed proper treatment for years. More education for medical professionals can help close this gap. With the right care, people with hEDS can enjoy a better quality of life than they ever imagined.
A medical misdiagnosis can be upsetting and embarrassing. It could also be fatal.
If you suspect that you or a loved one is a victim of misdiagnosis at a hospital or doctor’s office, contact a top attorney for Philadelphia misdiagnosis lawsuits. In the last few years, almost every teaching hospital in the city of Philadelphia has paid 8-figure verdicts and settlements to clients of Tom Duffy.