Trauma apt way of capturing EDS-clinician experience, patients say

In interviews, 26 people with hypermobile EDS talk of difficult encounters

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by Steve Bryson, PhD |

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Psychological trauma due to hostility or disinterest from a clinician is common among people with hypermobile Ehlers-Danlos syndrome (EDS), an interview-based study reported.

Such unpleasant encounters can lead patients to lose trust in healthcare providers, the healthcare system in general, and to develop anxiety regarding further care.

Researchers described these experiences as “clinician-associated traumatization,” and noted a need to better educate providers about rare diseases like EDS, because their attitudes appear to be linked to a limited understanding.

The study, “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes,” was published in the journal SSM – Qualitative Research in Health.

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‘Intense’ psychological, physical distress’ due to medical care

EDS is a complex condition affecting the connective tissues that provide structure to skin, joints, blood vessels, and other tissues and organs. Patients often experience symptoms that include chronic pain and fatigue, and among those with hypermobile EDS (hEDS), the disease’s most common form, joint dislocations and scoliosis, an abnormal curvature of the spine, are frequent.

Studies suggest that people with EDS are often labeled “difficult patients” due to repeat hospital visits and the time spent describing their condition at the clinic.

Many EDS patients in this study reported acute distress, the researchers noted.

“Our interviewees felt intense psychological and physical distress resulting directly from their medical care,” they wrote, noting such feelings could lead to poorer therapy adherence and health, and additional psychiatric conditions.

Researchers at the Indiana University School of Medicine interviewed 26 adults with hEDS to understand the origins of this trauma.

Patients, ages 19-60, were recruited from the Indiana University Ehlers-Danlos Clinic. Most were white (24) and female (22), a “demographic skew that closely reflects that of the population with a known hEDS diagnosis,” the researchers noted. Interviews were conducted over the phone.

Most (85%) immediately identified at least one encounter with a clinician that they considered particularly stressful.

A mother of an EDS patient detailed an encounter with an audiologist for hearing tests.

“The doctor strolls in, pompous, with five med students. He sits down in his chair and says, ‘She’s faking it.’ I’m like, ‘Excuse me?’ He’s like, ‘She’s completely faking it.’ Now [my daughter’s] crying in this chair with these five med students all looking at her, proclaiming based on her age and her sex — because she was female and at the time, she was like 13 or 14 – that it was typical for them to fake it.”

The woman noted her daughter had undergone multiple hearing tests at different clinics with consistent results. “He was just adamant … ‘She’s faking it, and she just needs to stop.'” The clinician also informed a group associated with a school for people with hearing loss of his opinion, preventing her daughter from being admitted to the school.

While the remaining 15% did not recall particular encounters, they reported negative experiences with clinicians in general.

Disrespectful or unprofessional clinician behavior was reported by 89% of people interviewed, and 92% said they felt invalidated. “They don’t take you seriously, or they think you’re overbearing or just paranoid,” one patient said.

One woman suggested her experience could have been due to misogyny or an inability to trust that women understand their bodies and can describe subjective symptoms.

Bad experiences with ‘many doctors, and that’s traumatizing in itself’

About half (46%) said their clinician had acted punitively, like the audiologist contacting the school group. Most (71%) acknowledged that negative feelings affected their behavior toward their clinicians.

“You’re crying out and asking — begging for help, and then not being believed,” said one person. “And it’s not one doctor; it was many doctors, and then that’s traumatizing in itself.”

Many patients (73%) felt abandoned when their clinicians ended their relationship through a referral or stopped responding to inquiries, which to some felt like punishment. “I understand that you don’t know what to do, but we can’t just leave me here like this!” one woman recalled saying.

Researchers noted that several people interviewed believed clinicians’ attitudes resulted from a limited understanding of EDS and a lack of resources to manage complaints of pain. “A lot of it is just ignorance, [but that’s] not an excuse for poor behavior,” said one patient.

Almost all respondents (96%) reported challenges in navigating the healthcare system and how interacting with “medical bureaucracy” interfered with daily activities. “I do several treatments a week, so it’s a fulltime job,” one participant said.

Based on these experiences, many reported a distrust of medical institutions. Those being treated by clinicians with whom they felt safe also noted concerns when seeing a new care provider.

“My cardiologist, I would say I trust her right now, but she sat with me and took the time to speak with me. But the other doctors, no,” one woman said.

Many patients also expressed self-doubt and questioned their own experiences. “I think this is all in your head,” one woman recalled a clinician telling her, adding “how would that not make someone doubt themselves … ?”

Worse health outcomes due to improper care also was noted by 81% of patients interviewed. Some suggested many physical therapists were too aggressive and inattentive to their limitations, causing greater pain.

A majority (85%) said they avoided specific clinicians because of negative experiences. Another 85% said they had avoided clinical care in general.

Many (68%) respondents also said they avoided talking with a health professional about EDS out of fear or stigma.

“I think there’s a stereotypical EDS patient that some doctors have in their head,” one woman noted, “and [it’s] not a very gracious interpretation. I see it as a hysterical woman who is a hypochondriac.” Among those who disclose an EDS diagnosis, many downplay symptoms out of fear of being treated like “a crazy person … I’ll be in a lot of pain, but I’ll pretend I’m not.”

Need for clinicians to better understand rare diseases like EDS

“Our work illustrates the qualitative, lived experiences that lead to trauma symptoms,” the researchers wrote. “We found that compounding negative interactional dynamics with healthcare providers result in what we call clinician-associated traumatization, which parallels the symptoms of more traditional conceptualizations of PTSD [post-traumatic stress disorder] and medical trauma.”

Patients, they added, experience “fear, shame, anhedonia [loss of pleasure in activities], and exaggerated negative beliefs about themselves” as a result of such trauma, both immediate and cumulative.

“Educating clinicians about hEDS and similar conditions has the potential to be instrumental in reducing the negative outcomes described,” the researchers noted.

“As EDS is a rare syndrome about which many patients have spent significant time and resources educating themselves, an EDS-naïve clinician’s refusal to listen to his or her patient’s understanding of the disease can do more than simply invalidate that patient: It can lead to medical harm based on uninformed decision making.”