“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades

A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many were accused of fabricating or exaggerating their symptoms, and 88% were explicitly told they were “making it up.” Other misdiagnoses included “attention seeking,” conversion disorder, “it’s all in your head,” and Munchausen syndrome by proxy.

Lead author Dr. Pradeep Chopra, a pain specialist located in Rhode Island, who has treated EDS patients for decades, shared the motivations behind the study: “I was seeing patients with EDS and almost all of them had gone through bad experiences of being misdiagnosed, misguided, and misjudged by the medical community. In 2010, I decided to collect the data on how common misdiagnosis was in patients with EDS, PoTS, MCAS, and all the associated conditions. I collected data over the next eight years. It took another seven years of going through a very strict peer review process before [the data] could be published in 2025.”

Misdiagnoses often lead to years of inappropriate treatments, such as psychiatric medication or therapy, while physical symptoms remain unaddressed. “I was shocked to discover that 94% of patients with a serious condition like EDS were being misdiagnosed,” Chopra said. The study highlights how cognitive biases—like anchoring (focusing too heavily on an initial impression) and availability bias (relying on recent or familiar diagnoses)—can significantly distort diagnostic accuracy. Once a psychiatric label is assigned, reevaluation becomes increasingly difficult.

These findings echo data from a 2009 survey by EURORDIS, the European Organisation for Rare Diseases. According to the survey, half of EDS patients waited over 14 years for a correct diagnosis, and a quarter waited up to 28 years. Women experienced longer delays (16 years on average) compared to men (four years). In total, 56% of respondents received at least one misdiagnosis, and psychiatric misdiagnoses accounted for 20% of those.

Misdiagnosis frequently resulted in harm: 70% of patients received inappropriate treatments, including unnecessary medical (30%), surgical (17%), or psychiatric (7%) interventions. Diagnosis delays were longest when psychiatric misdiagnosis occurred—rising to 22 years on average. For 86% of patients, the diagnostic delay was reported to have serious and lasting consequences, either harm to their physical or their mental health, such as trauma. Some even died as a consequence of not being believed–which, sadly, has recently been proven through the deaths of three women in New Zealand.

Dr. Chopra emphasized the importance of validation for patients who have long been dismissed: “Feedback from patients [and] their families has been overwhelming that the information in the paper is validating of the difficult journey they are going through.”

The study calls for a multidisciplinary, bias-aware diagnostic process that includes rheumatologists, neurologists, pain specialists, and mental health professionals. It recommends improved clinical training, standardized diagnostic tools, validated screening instruments, and greater patient-provider communication. Chopra and his team also urge systemic changes that would encourage clinicians to report diagnostic errors without fear of blame—making space for learning and improvement.

This study doesn’t just offer data—it offers vindication. The damage caused by disbelief and biases is real, measurable, and, for many, irreversible. The next step is not more awareness. It’s action. Doctors must take symptoms seriously, even when they cannot see them. They must reflect on their biases, not default to psychosomatic explanations, and most importantly, they must see the patient as the expert on their bodies. After all, patients spend all day, every day, with these symptoms, in this body. A doctor is only seeing a brief moment in time. Which provides more information: a documentary or a photograph?

Read the original study here: 

Lee, C. and Chopra, P., 2025. The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome. Children, 12(6), p.698.

[Editorial note for transparency: ChatGPT was used to summarize data, but all data have been validated before publication.]