Medical Gaslighting and Lyme Disease: The Patient Experience

Abstract

Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated “notifiable disease”. As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of “contested illnesses”, which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

“I have to fight for them to investigate things”: a qualitative exploration of physical and mental healthcare for women diagnosed with mental illness

“…Health inequities experienced by women in their communities and relationships are compounded by inequities in the health system, such as medical gaslighting ( 15 ), also known as health-related communicative disenfranchisement ( 26–29 ). Medical gaslighting refers to the denial and dismissal of symptoms, invalidation and disregard of patient concerns and wishes, refusal of screening, referral and treatment, gender bias in healthcare, stigmatisation of mental ill health by healthcare professionals, and inadequate care experienced by individuals in medical settings ( 15–17 , 19 , 30–35 ). For example, women may experience being dismissed as lacking credibility when reporting illness symptoms ( 16 , 17 , 26 , 31 , 35 ).…”