By Nancy Dougherty

Illness invalidation by medical professionals—sometimes called “gaslighting”—is an underappreciated and understudied problem in Lyme disease.

Many Lyme disease patients complain not only of fighting to recover their health but also of fighting to be believed by health care practitioners.

Expecting to receive understanding and proficient care from medical professionals, many instead experience having their persistent debilitating symptoms dismissed, minimized, disbelieved and/or psychologized.

How common is the occurrence of medical gaslighting in Lyme disease? Is illness invalidation by medical professionals related to disease severity? Are there specific constituencies who are being affected more than others?

These are some of the questions that a team of researchers led by Alison Rebman, MPH, Assistant Professor in Medicine and Director for Clinical and Epidemiological Research at the Johns Hopkins Lyme Disease Research Center at Johns Hopkins Medicine, set out to identify and quantify in a cohort of well-characterized Lyme disease patients.

Invalidating encounters

The Johns Hopkins study, published in August 2024 in Scientific Reports, finds that invalidating encounters with medical professionals are common for post-treatment Lyme disease (PTLD) patients, particularly women and younger patients, and also are linked to higher illness severity.

Lyme disease is the most common tick and vector-borne disease in the US with about 500,000 new cases per year. Lyme infections are expanding geographically, and acute and chronic cases are on the rise in the US and Eurasia. Lyme infection-associated chronic illness affects around 2 million Americans and can be difficult to properly diagnose and effectively treat.

A Lyme infection can affect multiple body systems including musculoskeletal, neurologic, and cardiovascular. Patients with early diagnosis and appropriate treatment usually get better. However, about 10-20% of patients even when treated promptly with standard of care antibiotics do not return to health and are functionally impaired by persistent musculoskeletal pain, crushing fatigue, and cognitive dysfunction, known in the research setting as post-treatment Lyme disease (PTLD).

Patients frequently refer to this as “chronic Lyme.” Misdiagnosis and delayed treatments further increase the risk for PTLD as well as for more broadly defined community-based Lyme infection-associated chronic illness or “chronic Lyme.”

Women and younger patients

In the Johns Hopkins study, 49% of the PTLD patients reported a lack of understanding and 29% experienced discounting from medical professionals. Additionally, women and younger patients were at higher risk for experiencing more invalidation than men or older age patients.

The study found, “Before their initial diagnosis of Lyme disease, approximately half (51.3%) had first been told that their symptoms represented another illness or condition. This high rate is consistent with the hypothesis that diagnosis and treatment delays, and possibly exposure to inappropriate treatment, may be risk factors for PTLD.”

Women more often received alternative diagnoses (such as another contested illness like fibromyalgia or ME/CFS and/or a psychological illness) which in turn correlated with more discounting and lack of understanding. PTLD patients who reported the highest levels of illness invalidation were discovered to have greater symptom severity, lower quality of life, and less trust in physicians.

The pervasiveness of Lyme disease illness invalidation and the consequential negative effects on illness burden and health outcomes are not broadly known by medical professionals.

Improved physician education is needed to help engender more patient-centered paradigms that incorporate the patient illness experience and better recognize how that experience may impact the healing process.

National Academies look at IACI

The National Academies of Sciences, Engineering and Medicine (NASEM) has helped validate infection- associated chronic illnesses as being significant public health problems that need greater national attention, a coordinated strategy, and considerably more federal resources.

NASEM held its first national workshop on infection-associated chronic illnesses (IACI) in June 2023 to explore overlapping symptoms and biologic pathways for IACIs including Lyme disease, long COVID, ME/CFS, MS, and others.

In July 2024, a follow-up NASEM meeting focused specifically on Lyme infection-associated chronic Illness. Both forums discussed the importance of listening to and incorporating patients’ illness experience perspectives into improving diagnostic and treatment approaches. For example, patient-driven data such as MyLymeData can be leveraged to improve research and clinical care. It is vital to listen to patients especially when diagnostics are problematic, treatments are inadequate, and the science is contested or evolving.

Building upon insights and collaborative momentum from the NASEM IACI meetings, a coalition of advocates (patient, scientific and medical) are now calling for the creation of a new National Institutes of Health (NIH) office to help strengthen and coordinate research across infection-associated chronic conditions and illnesses including Lyme infection-associated chronic illness, Long COVID, ME/CFS, PANS/PANDAS, POTS/dysautonomia and others.

Listening to patients will be key to advancing solutions, reducing invalidating patient-practitioner encounters, and improving health outcomes.

Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.