73% of EDS patients second-guess pain, often after clinician skepticism: Study
Self-doubt linked to altered symptom perception, healthcare avoidance
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People with Ehlers-Danlos syndrome (EDS) frequently experience self-doubt about their pain and other symptoms, often in the context of skepticism they encounter from clinicians, according to a new U.S. study.
The research found that nearly three-quarters of participants questioned the severity — and sometimes even the reality — of their pain, a pattern that was linked to reduced self-worth, altered symptom perception, and avoidance of healthcare.
“These findings have important implications for clinicians, who may inadvertently reinforce self-doubt through discussions of diagnostic uncertainty,” the researchers wrote, noting that clinicians need to carefully communicate any legitimate skepticism they may have about a patient’s symptoms.
Indeed, the investigators found that people with EDS “attributed much of their self-doubt to repeated dismissal and minimisation of their symptoms in healthcare settings, especially during childhood.”
The study, “Sources and consequences of self-doubt in patients with Ehlers-Danlos syndrome: a qualitative study in Europe and North America,” was published in the journal BMJ Open.
Chronic pain is one of the most frequent complaints among people with EDS, affecting those with the disease’s most common form, hypermobile EDS (hEDS), as well as individuals with other EDS types.
Still, it is one of the hardest symptoms to assess, as pain has no reliable biological markers and cannot be measured using imaging or laboratory tests.
No imaging or lab tests can measure pain or its severity
Instead, the presence and severity of a person’s can only be evaluated through the self-report of the individual who’s experiencing it.
“Therefore, its appropriate care depends on both the capacity of patients to report their pain and the capacity of their clinicians to trust them,” the researchers wrote.
People with EDS, however, often encounter skepticism when describing their symptoms, particularly in healthcare settings. Such disbelief has been associated with diagnostic delays, greater healthcare utilization, and psychosocial harm, the investigators noted.
While previous research has mainly focused on the sources of doubt and the harms associated with it, few studies have examined how disbelief may be internalized by patients, leading them to doubt their own experiences — including their pain and its severity.
To address this gap, researchers at Indiana University School of Medicine surveyed adults with EDS. A total of 39 — 21 with hEDS and 18 with other EDS types — completed in-depth interviews. These meetings explored the sources, consequences, and coping strategies related to self-doubt.
The survey was conducted between February and April 2024, and follow-up interviews were held between June and October of that year. Most participants were white individuals, and women (74%). The average age among those interviewed was 41. An average of 10 years had gone by since their diagnosis.
Self-doubt found to be common for people with EDS
Survey results showed that self-doubt was common among people with EDS. Overall, 73% of respondents said they doubted or second-guessed the severity — and sometimes even the reality — of their pain at least some of the time. This included 68% of people with hEDS and 79% of those with other EDS types.
In interviews, participants said self-doubt often went beyond uncertainty about diagnosis. Many described questioning their own judgment, bodily sensations, and decision-making. Some said they doubted the cause of their pain rather than its existence, worrying it might be psychological rather than related to EDS.
“I didn’t necessarily doubt that I was in pain. I knew that I was in pain,” one participant said. “I guess it was more […] there is no concrete reason for me to be experiencing pain every day. […] The alternative is this is all the result of all of … trauma growing up.”
Participants consistently traced their self-doubt to skepticism they encountered from others, most often clinicians. Many said their pain was questioned because it did not follow expected patterns or because they did not appear visibly distressed.
“You wouldn’t be sitting here talking to me in this way if you were in that amount of pain,” one participant recalled being told by a physician.
Children’s reports of EDS pain dismissed as ‘overdramatic’ or ‘whiny’
Bias related to age and sex was frequently cited by participants. Several said their symptoms were dismissed during childhood or adolescence, with them being “often treated as ‘overdramatic’ or ‘whiny.'” Some were thought to be making up their complaints to avoid school or chores — experiences these respondents said had long-lasting effects on their self-trust.
“I feel like it’s something that was sort of like a button that was installed in childhood, and doctors push it, and then I’m sort of triggered into self-doubt,” one participant said.
While most participants (79%) acknowledged that some degree of clinical doubt is part of medical practice, they emphasized that how that skepticism is communicated is what matters. Many said personal experiences, such as pain and fatigue, should not be doubted outright. Some stressed the importance of clinicians expressing uncertainty “delicately,” while keeping in mind that “in the majority of cases, [patients] just want to get better.”
Doctors make you feel like you don’t deserve care, … like you’re wasting resources for people who need it. … You kind of hate yourself, because you’re like, maybe I don’t deserve this [healthcare]. Maybe I really do suck.
Self-doubt had tangible consequences. Participants said it led them to underestimate pain severity, delay or avoid seeking care, and experience damage to their self-worth.
“Doctors make you feel like you don’t deserve care, […] like you’re wasting resources for people who need it,” one participant said. “You kind of hate yourself, because you’re like, maybe I don’t deserve this [healthcare]. Maybe I really do suck.”
Despite these challenges, many participants described strategies for managing self-doubt. These included grounding themselves in visible or objective signs of their condition, seeking validation from trusted family members, and connecting with peers. Participants often sought to work with clinicians who would provide them with medical substantiation of EDS.
Once trust in a clinician was lost, 73% of survey respondents said it could not be regained. A minority of participants, however, said that clinicians could rebuild trust by acknowledging mistakes and taking the time to listen to and respond to patients’ concerns.
The researchers concluded that self-doubt is a “prominent issue” for people with EDS. While clinician skepticism may be necessary for evidence-based medicine, the authors stressed that “doubt need not be delegitimising.” They argued that clinicians can reduce harm by practicing “epistemic humility” — acknowledging the limits of their expertise while respecting patients’ knowledge of their own subjective experiences.
