The Invisible Patient Struggle: The case of Medical Gaslighting and Lyme Disease

The Invisible Patient Struggle: The case of Medical Gaslighting and Lyme Disease

Lyme disease, caused by the bacteria Borrelia Burgdorferi, is a prevalent and growing public health concern. With the bacteria having the potential to affect the muscles, joints, organs, and the central nervous system, chronic Lyme Disease can have severe and life-changing implications.

The disease is known to be the most common vector-borne human infection in England and Wales, with the rate of cases identified increasing every year. A disease vector is a living creature that can carry and transmit parasites or microbes, to another living organism. In the cause of Lyme disease the vector is Ixodes ricinus, the deer tick.

Despite this increasing incidence of Lyme disease, patients with this condition often face barriers in obtaining a timely and accurate diagnosis, subsequently leading to long-term chronic disease. Researchers estimate that there are a large group of undiagnosed individuals due to factors such as:

  • Misdiagnosis of Lyme as other disabling conditions: Diagnosing Lyme disease is a complex process requiring expert knowledge and a holistic perspective.
  • Poor test sensitivity: The ELISA test used to detect Borrelia Burgdorferi, may not be sensitive enough until over a month post-infection due to the delayed immune response humans have to the bacteria.
  • Patients have no recollection of tick bites: Ticks can be as small as <1 mm and release a pain reliever into the skin as they bite.
  • Medical gaslighting: Being manipulated by medical professionals can exacerbate the difficulties faced by patients with Lyme disease, as their symptoms are often dismissed or attributed to mental illness, anxiety, stress, or ageing.

The Issue of Medical Gaslighting

Medical gaslighting occurs when patients’ symptoms, experiences or worries are dismissed, downplayed, or invalidated causing the individual to doubt their own perception of their health. This phenomenon can have severe consequences for patients with Lyme disease, leading to delayed diagnosis, inadequate treatment, and psychological distress which only exacerbates a decline in health. Related diseases  include inflammatory bowel disease, endometriosis, peptic ulcers and long COVID.

The power imbalance between doctor and patient plays a significant role, with women being disproportionately affected by medical gaslighting.

Proof of an ongoing Lyme disease infection via blood testing does not necessarily prevent medical gaslighting, as many individuals with positive blood test results still face disbelief from healthcare providers. Additionally, when diagnosing Lyme disease, the primary indicator of infection, Erythema Migrans (EM) or a ‘bullseye rash’, is not present in most cases and is more difficult to identify on darker skin tones. This makes Lyme disease diagnosis susceptible to racial disparity, indicating an even greater need for more clinical awareness.

In the case of Lyme disease, patients may be told their symptoms are ‘all in their head’, that their pain is less than they are reporting or their symptoms are solely related to lifestyle factors such as nutrition or obesity or simply ageing.

Exploring the medical research

The 2023 paper by Fagen et al, surveyed just under 1000 patients with Lyme disease from multiple countries, with 5 having the most samples: US, UK, Ireland, Australia and Canada.

From the survey they discovered “a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme disease”. Doctors were no more likely to believe a positive blood test patient had Lyme disease than a patient who had not obtained a blood test. When looking at the UK respondents, when asked if a doctor refused a test for Lyme, 54% said that they had been refused testing. The paper concluded that over half of the respondents saw 7 or more healthcare professionals before being diagnosed.

It is clear that medical gaslighting is occurring across the globe, making chronic Lyme disease not only a difficult condition to live with physically but has the potential to create long-term mental struggle. Without changes being made on how we perceive, listen and diagnose potential Lyme patients, chronic Lyme disease will continue to be shrouded in diagnostic challenges and delayed treatments. Lack of awareness among healthcare professionals and the need for improved diagnostic tools and guidelines are key factors in addressing medical gaslighting and improving Lyme disease recognition and diagnosis. Advocacy for comprehensive medical education on Lyme disease is essential in combating medical gaslighting.

Navigating Treatment and Empowerment

At Levitas, we have successfully acknowledged and treated Lyme Disease in our clinics and have developed a clear understanding of the level of treatment needed, both on a physical and mental level. We have developed a personalised integrative medical approach, with treatment protocols customised to each patient based on comprehensive diagnostics and lab work alongside our holistic methodology. From IV therapy to nutritional counselling, we are confident in developing individualised approaches for each and every patient.

Looking for more information? Contact a Levitas clinician today:

T : +44 (0)1483 452 555
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February 23rd, 2024

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