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94.4% of Ehlers–Danlos Patients Reported Psychiatric Labelling or Dismissal. Two-Thirds Reported Conversion Disorder

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Imagine living with a physical illness while being told that you are making it up, seeking attention or that the problem is in your head. Now imagine eventually receiving a diagnosis of hypermobile Ehlers–Danlos syndrome (hEDS), a hereditary connective tissue disorder, after spending years trying to convince doctors that something is physically wrong. According to a 2025 study published in Children, experiences like these were reported by an extraordinary proportion of patients attending a specialist centre.

Researchers Chanbin Lee and Pradeep Chopra examined the records of 429 patients diagnosed with hEDS at the Center for Complex Conditions in Rhode Island, United States. The records covered patients treated between January 2010 and December 2018. During routine intake, patients were asked whether previous physicians had attributed their symptoms to psychiatric causes, diagnosed them with conversion disorder or factitious disorder, or accused them of fabricating symptoms or seeking attention.

Of those 429 patients, 405 (94.4%) reported at least one of these experiences. Only 24 patients, or 5.6%, answered no to every question. The figure is staggering, but understanding what it measures is essential. It does not mean that 94.4% received a formal psychiatric diagnosis. The researchers combined reported diagnoses with accusations and dismissive statements, treating the overall result as a measure of psychiatric misdiagnosis.

Here is what the patients reported:

  • 94.4% (405 patients) reported at least one psychiatric label or accusation.
  • 88% (378 patients) reported being told they were making their symptoms up.
  • 76% (326 patients) reported being labelled attention-seeking.
  • 66.7% (286 patients) reported a previous conversion disorder diagnosis.
  • 60% (255 patients) reported being told their condition was in their head.
  • 4% (16 patients) reported accusations or diagnoses involving Munchausen syndrome or factitious disorder.

These categories overlap and must not be added together. The results were also based on retrospective patient reports rather than independently verified previous clinical records. Nevertheless, the distinction between the two largest findings deserves particular attention. A reported conversion disorder diagnosis is a diagnostic claim. Telling someone they are fabricating symptoms or seeking attention is an accusation about their credibility. Those are different things, and both have consequences.

The 94.4% figure may be more disturbing than the conversion disorder statistic precisely because it captures something broader than formal diagnosis. A doctor does not need to write a psychiatric diagnosis in a medical record to undermine a patient's credibility. If a patient is repeatedly treated as dishonest, exaggerating or attention-seeking, that judgement can influence how their subsequent complaints are received. The next clinician may inherit an impression of the patient rather than an adequately investigated explanation of their symptoms.

Consider the 378 patients who reported being told they were making their symptoms up. That represents 88% of the entire study population. These were patients who subsequently received a clinical diagnosis of hEDS. Their later diagnosis does not establish that every earlier symptom was caused by hEDS, but it certainly demonstrates why accusations of fabrication should never substitute for medical investigation. A clinician who cannot explain a symptom has not thereby established that the patient invented it.

The 326 patients who reported being labelled attention-seeking raise the same concern. Attention-seeking is not an explanation for joint instability, connective tissue abnormalities, autonomic dysfunction or gastrointestinal complications. It is a judgement about behaviour. Even where a clinician genuinely suspects a psychiatric or behavioural contribution, that suspicion does not eliminate the obligation to investigate physical disease when clinically indicated.

The conversion disorder finding is separately important. Conversion disorder is the historical diagnostic terminology associated with what is now commonly called functional neurological disorder (FND). In this study, 286 patients, approximately two-thirds of the entire group, reported previously receiving that diagnosis. The study does not establish that all 286 diagnoses were incorrect, and it would be misleading to present them as 286 independently confirmed FND misdiagnoses. But the concentration of reported conversion disorder diagnoses among patients subsequently diagnosed with hEDS demands scrutiny. What evidence supported those earlier diagnoses? Were the physical symptoms adequately investigated? Did the label discourage further assessment? The study cannot answer those questions because the researchers did not review the original diagnostic records.

The authors discuss diagnostic anchoring, limited awareness of hEDS and overlapping symptoms as potential contributors. Anchoring occurs when an initial explanation becomes disproportionately influential, making subsequent evidence less likely to change the clinician's assessment. Once a patient is regarded as having psychiatric or functional symptoms, new complaints may be interpreted through that existing label. The danger is not merely that the first diagnosis might be incorrect. It is that the first diagnosis can influence the interpretation of everything that follows.

Hypermobile Ehlers–Danlos syndrome provides a particularly relevant example because it can be difficult to recognise. Unlike most other EDS subtypes, hEDS had no established causative gene at the time of publication, and diagnosis relied on clinical criteria. Patients may experience chronic pain, joint instability and multisystem complaints. The authors also discuss associated conditions such as postural orthostatic tachycardia syndrome (POTS) and gastrointestinal motility disorders. A collection of symptoms that appears disconnected to one clinician may therefore warrant a more comprehensive physical assessment rather than a premature psychiatric explanation.

This connects with the previous examination of POTS and FND. There, a patient's gait findings were interpreted as functional while POTS was independently established. The question was whether the findings demonstrated two separate disorders or whether overlapping clinical features had been divided into different diagnostic categories. The hEDS study does not resolve that issue, but it illustrates the consequences of assuming that a diagnostic label adequately explains a complicated clinical presentation.

It also connects with the discussion of FND, autism and diagnostic overlap, particularly the common phenotype hypothesis. That hypothesis asks whether clinical findings classified as functional might sometimes represent patterns shared across neurological, autonomic, connective tissue and other medical conditions rather than evidence of an independent disorder. The present study did not assess positive functional neurological signs and cannot establish that hypothesis. However, it reinforces the need to investigate overlapping presentations instead of automatically interpreting additional diagnoses as separate, coexisting conditions.

There is a related problem with the use of comorbidity to explain disputed diagnoses. Finding hEDS after a conversion disorder diagnosis does not automatically prove the earlier diagnosis was wrong. But claiming that the two conditions coexist does not prove it was right either. Both possibilities require evidence. A third possibility is that some clinical findings attributed to different disorders reflect a shared phenotype rather than two independently established disease processes. Simply invoking comorbidity does not distinguish between these explanations.

We have previously examined the dangers of diagnostic certainty in Inside the Reasoning of an FND Professional. One recurring concern is the gap between the standards clinicians describe and the decisions patients report experiencing in practice. It is not enough to insist that a diagnosis should be made carefully, that alternative conditions should be considered or that new symptoms should trigger reassessment. The relevant question is whether those safeguards were actually followed. In this study, the researchers could not examine the original clinical decisions, which is precisely the evidence needed to establish what went wrong.

There are substantial methodological limitations. The study involved a single specialist centre serving patients with complex conditions, creating a serious risk of selection bias. The questionnaire was not a validated diagnostic instrument. Previous psychiatric assessments were not independently reviewed, the timing of earlier diagnoses was unavailable, and patient recall may have influenced the findings. The 94.4% figure therefore cannot be generalised to all people with hEDS, and it should not be presented as a verified psychiatric misdiagnosis rate. The researchers' own methods do not support that level of certainty.

But these limitations do not erase the distinction between diagnostic error and diagnostic dismissal. Even if every reported conversion disorder diagnosis were independently reviewed, that would not necessarily capture the harm associated with accusations of fabrication, attention-seeking or dishonesty. A patient can experience damaging clinical dismissal without ever receiving a formal psychiatric diagnosis. A medical record may contain no incorrect diagnosis while the patient has nevertheless encountered repeated failures to take their physical complaints seriously.

That is why the 94.4% finding deserves attention beyond the paper's discussion of psychiatric misdiagnosis. The researchers have identified a specialist patient population in which reports of dismissal and psychiatric labelling were extraordinarily common. The study cannot independently verify every encounter or quantify the resulting harm. It does, however, raise an obvious question about how medicine evaluates diagnostic failures that never appear as an incorrect diagnosis in a patient's records.

There is something profoundly wrong with treating an unexplained symptom as evidence against the patient's credibility. A physician may be uncertain about the cause of a complaint. A patient may have symptoms that do not fit a familiar disease pattern. Investigations may be normal, incomplete or inconclusive. None of those circumstances establishes dishonesty, fabrication or attention-seeking. Those are separate claims that require their own evidence.

The paper's most important contribution may therefore be the distinction its own headline statistic fails to make. Of 429 patients subsequently diagnosed with hEDS, 286 reported a previous conversion disorder diagnosis, but 405 reported at least one psychiatric label or accusation. The broader finding is not simply about how frequently doctors may have selected the wrong diagnostic category. It is about how frequently these patients reported that their credibility had been questioned or their symptoms attributed to psychiatric explanations.

Medicine cannot measure the full consequences of diagnostic failure by counting incorrect diagnoses alone. It must also confront what happens when patients are dismissed before a diagnosis is ever made. The 94.4% figure is not proof that 94.4% of all hEDS patients were misdiagnosed. It is evidence that reported psychiatric labelling and dismissal were extraordinarily common in this selected group. And the fact that so many patients subsequently received a physical diagnosis makes those reports impossible to dismiss as a trivial issue.

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