Persistent Lyme disease sufferers dismissed by medical group

Persistent Lyme disease sufferers dismissed by medical group

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All too incessantly, people with Lyme disease are dismissed by the medical group with their signs attributed to a different medical situation or unrecognized completely. Lyme disease, acute and power, has been labeled a “contested sickness,” based on the authors of a brand new research. This labeling can result in medical gaslighting.

Of their article, “Medical Gaslighting and Lyme Disease: The Patient Experience,” Fagen and colleagues study the intensive vary of gaslighting strategies skilled by power Lyme disease sufferers.¹ And, discover the demographic variables (i.e., geographic location) which may be related to greater charges of medical gaslighting.

What’s medical gaslighting? Gaslighting refers to a sort of manipulation which leads to an individual questioning their very own actuality or experiences. Medical gaslighting happens when a medical skilled dismisses or downplays a affected person’s signs.

ONLINE SURVEY: Persistent Lyme disease sufferers

The authors performed a web-based survey involving almost 1,000 people who had Lyme disease or had a baby with Lyme disease. The bulk resided in america (48%), Australia (15%), Canada (15%), Eire (9%), and the UK (8%).

“The variety of Lyme disease sufferers with lingering signs within the US was projected to be as excessive as 1,944,189 in 2020.”

Respondents answered questions on their experiences with the medical group whereas they have been within the technique of being identified and handled for Lyme disease. The bulk (71%) had obtained a prognosis based mostly on a optimistic blood check ordered by a doctor, whereas 13% have been identified based mostly on a doctor’s symptom-driven medical prognosis.

STUDY RESULTS:

  • The authors discovered that sufferers have been “more likely to be informed by practitioners that they have been simply overreacting to their signs, there was no such factor as [chronic Lyme disease], or that their signs have been brought on by regular ageing, psychological sickness or stress.”
  • “Many sufferers additionally felt that medical professionals incessantly implied the affected person’s signs have been merely psychosomatic.”
  • “… a affected person’s optimistic blood check standing didn’t affect how possible a physician was to imagine the affected person had Lyme disease.”
  • “physicians in Lyme endemic areas have been extra prone to grant a affected person’s request for a Lyme disease check than these in non-endemic areas.”

Docs incessantly didn’t imagine a affected person had Lyme disease, though they’d a optimistic blood check.

Moreover, sufferers in non-Lyme endemic states have been incessantly informed:

  • they might not have Lyme disease as a result of there have been no ticks or Lyme disease of their space;
  • they didn’t have Lyme disease regardless of having a “bulls-eye” rash;
  • their Lyme disease signs have been simply of their head.

In line with the research, “a putting majority of respondents felt that they have been handled as a marginalized affected person group.” They have been additionally informed by medical professionals that they have been overreacting and that [chronic Lyme disease] doesn’t exist.

“We additionally contend {that a} median of 10 docs seen earlier than prognosis is, in and of itself, extremely suggestive that medical gaslighting occurred,” the authors state. And, of specific concern – physicians dismissed a Lyme disease prognosis regardless of having a optimistic blood check.

The authors level out, “attributing signs solely to the ageing course of, dismissing sufferers’ bloodwork outcomes, and outward manifestations of a medical situation (e.g., the EM rash) are indicative of medical gaslighting.”

CONTESTED ILLNESSES

The authors level out, “Many ailments have been beforehand regarded as contested sicknesses as a result of their organic foundation was not understood.” These embody inflammatory bowel illness, endometriosis, peptic ulcers, and, extra not too long ago, Lengthy COVID.

“The contestation of [chronic Lyme disease] has created a local weather by which docs could also be much less inclined to imagine that Lyme disease sufferers’ persistent signs are attributable to an ongoing an infection. Thus, such sufferers could not obtain remedies for his or her underlying an infection,” the authors state.

References:
  1. Fagen, J.L.; Shelton, J.A.; Luché-Thayer, J. Medical Gaslighting and Lyme Illness: The Affected person Expertise. Healthcare 2024, 12, 78. https://doi.org/10.3390/healthcare12010078



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