Dismissive doctors cause EDS patients to minimize their own pain
Study finds patients don't get treatment, leading to worse outcomes
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Dismissive attitudes from healthcare providers can lead people with Ehlers-Danlos syndrome (EDS) to doubt their own experiences of chronic pain, a study found.
Researchers found that EDS patients facing skepticism from care providers will often end up minimizing their own pain — and as a result, their pain doesn’t get treated appropriately, and worsens. The scientists said their findings underscore the importance of open, empathetic communication between healthcare providers and their patients.
The study, “Painful Subjects: The Sociogenic Processing of Pain in Individuals with Ehlers-Danlos Syndromes,” was published in SSM – Mental Health.
EDS encompasses a group of connective tissue disorders marked by unusually mobile joints and stretchy skin. Chronic pain is a common symptom of EDS.
Pain is often understood to be a personal, subjective experience. But humans are social animals, and reactions from others can shape how one feels, even about something as subjective as one’s own pain. This is further exacerbated when there is a perceived imbalance of power and knowledge, as is the case when a patient is seeking care from a doctor, the researchers said.
‘You look fine’
People with EDS often report having their pain dismissed by clinicians.
A trio of U.S. scientists wanted to delve deeper into how this type of dismissal affects patients’ perceptions of their own pain. They conducted in-depth interviews with 39 people with various types of EDS.
The researchers highlighted three major themes that arose from these discussions: Patients face obstacles when expressing their pain to clinicians, they tend to think of pain as a normal part of the disease, and they question their own perception of pain when faced with dismissal from others.
“If I detect that somebody’s doubting me, I shut down and just kind of pass it off, more like: ‘Yep, you’re right, everything’s fine,’” one patient said.
This attitude could lead to a vicious cycle in which patients minimize their pain and don’t receive proper treatment, causing the pain to worsen until they eventually seek further medical care, at which point more dismissals can restart the cycle. In some cases, patients found themselves having to act out in order to be taken seriously.
“[The nurse] is like, ‘well, you look fine,’” said one. “‘And I’m like, ‘I’m not fine’. So, I’m going back and forth with her. And then I started crying and I’m in hysterics. That’s when she believed me [… They] won’t believe somebody until they’re in tears and crying. That’s just dumb.”
The researchers also found that many EDS patients initially dismiss their pain or think of it as normal. Often, it is only by comparing themselves against people who don’t have the disease that people with EDS are able to contextualize the extent of their pain. For example, one patient reflected on finding herself struggling during a hiking trip, while others, including much older people, were not. “I would be like: ‘Does it really feel like this?’ I mean, everybody else is walking up this hill,” she said.
Paired with this realization of abnormality, patients felt that tools like pain scales, distilling the subjective experience of pain into a number rated from 1 to 10, were ill-suited to represent their pain.
“I think [pain scales are] dumb,” one patient said, “because […] somebody who’s always in pain has a higher pain tolerance, so when they say it’s a seven, somebody looks at them like they’re crazy.”
The study also found that when EDS patients are faced with disbelief from others, they will often end up doubting or minimizing their pain, questioning whether their pain is really that bad or is worth seeking treatment for.
“I tend to doubt a lot, if what I’m feeling is what I’m actually feeling or if I’m making it up, even though I’m not even sharing it with someone,” one patient said.
The researchers said the findings underscore how unempathetic reactions from healthcare providers can have lasting impacts on EDS patients, leading not only to emotional hurt and frustration but also to worse health outcomes. They called for further work to understand how these interactions can go awry and to develop new frameworks to ensure that all patients experiencing pain are heard.
