Chronic Lyme disease patients dismissed by medical community

All too frequently, individuals with Lyme disease are dismissed by the medical community with their symptoms attributed to another medical condition or unrecognized entirely. Lyme disease, acute and chronic, has been labeled a “contested illness,” according to the authors of a new study. This labeling can lead to medical gaslighting.

In their article, “Medical Gaslighting and Lyme Disease: The Patient Experience,” Fagen and colleagues examine the extensive range of gaslighting techniques experienced by chronic Lyme disease patients.¹ And, explore the demographic variables (i.e., geographic location) that may be associated with higher rates of medical gaslighting.

What is medical gaslighting? Gaslighting refers to a type of manipulation which results in a person questioning their own reality or experiences. Medical gaslighting occurs when a medical professional dismisses or downplays a patient’s symptoms.

ONLINE SURVEY: Chronic Lyme disease patients

The authors conducted an online survey involving nearly 1,000 individuals who had Lyme disease or had a child with Lyme disease. The majority resided in the United States (48%), Australia (15%), Canada (15%), Ireland (9%), and the UK (8%).

“The number of Lyme disease patients with lingering symptoms in the US was projected to be as high as 1,944,189 in 2020.”

Respondents answered questions about their experiences with the medical community while they were in the process of being diagnosed and treated for Lyme disease. The majority (71%) had received a diagnosis based on a positive blood test ordered by a physician, while 13% were diagnosed based on a physician’s symptom-driven clinical diagnosis.

STUDY RESULTS:

• The authors found that patients were “much more likely to be told by practitioners that they were just overreacting to their symptoms, there was no such thing as [chronic Lyme disease], or that their symptoms were caused by normal aging, mental illness or stress.”
• “Many patients also felt that medical professionals frequently implied the patient’s symptoms were merely psychosomatic.”
• “… a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme disease.”
• “physicians in Lyme endemic regions were more likely to grant a patient’s request for a Lyme disease test than those in non-endemic regions.”

Doctors frequently did not believe a patient had Lyme disease, even though they had a positive blood test.

Additionally, patients in non-Lyme endemic states were frequently told:

• they could not have Lyme disease because there were no ticks or Lyme disease in their area;
• they did not have Lyme disease despite having a “bulls-eye” rash;
• their Lyme disease symptoms were just in their head.

According to the study, “a striking majority of respondents felt that they were treated as a marginalized patient group.” They were also told by medical professionals that they were overreacting and that [chronic Lyme disease] does not exist.

“We also contend that a median of 10 doctors seen before diagnosis is, in and of itself, highly suggestive that medical gaslighting occurred,” the authors state. And, of particular concern – physicians dismissed a Lyme disease diagnosis despite having a positive blood test.

The authors point out, “attributing symptoms solely to the aging process, dismissing patients’ bloodwork results, and outward manifestations of a medical condition (e.g., the EM rash) are indicative of medical gaslighting.”

CONTESTED ILLNESSES

The authors point out, “Many diseases were previously thought to be contested illnesses because their biological basis was not understood.” These include inflammatory bowel disease, endometriosis, peptic ulcers, and, more recently, Long COVID.

“The contestation of [chronic Lyme disease] has created a climate in which doctors may be less inclined to believe that Lyme disease patients’ persistent symptoms are attributable to an ongoing infection. Thus, such patients may not receive treatments for their underlying infection,” the authors state.