White Tears: Chronic Lyme Disease
In today’s news, the lines between fact and fiction are blurred, leaving people susceptible to false claims, ideas, and opinions. The power to craft these narratives lies in the hands of the most powerful and privileged members of our community. At times, these false stories become the foundation of beliefs that shape our government, economy, and health care system. The emergence of the Chronic Lyme Disease movement shows us how medical narratives are constructed and by who, and the detrimental effects these stories can have on our health. Chronic Lyme Disease is one of many cases of misguided medicine, all of which lack a scientific basis and instead are perpetuated by false narratives.
Before we explore the underlying constructs that led to the popularization of this diagnosis we must first establish one thing: Chronic Lyme Disease has no basis in science. Lyme Disease is a tick born illness caused by the bacterium Borrelia burgdorferi and causes more than 30,000 infections annually in the United States. Prevalence of infection has been steadily rising since 1991 and is predicted to continue this trend in the following years. Reported cases are heavily concentrated in the Northeast. Clinical disease is characterized by a distinct bull’s eye shaped rash and flu like symptoms that can be diagnosed with a blood test. A small minority of patients can develop a combination of mild fatigue, musculoskeletal pain, difficulties with concentration, and short-term memory loss at a point long after their initial tick bite. It is in these latter, non-specific symptoms, many argue traditional Lyme turns into Chronic Lyme. According to The New England Journal of Medicine, “A diagnosis is often based solely on clinical judgment rather than on well-defined clinical criteria and validated laboratory studies, and it is often made regardless of whether patients have been in areas where Lyme disease is endemic”. The diagnosis is largely rejected in the medical community, which leads to the question: How has Chronic Lyme been woven into the fabric of evidence-based medicine for thousands of patients, medical providers, and politicians?
To answer this question, we must understand the lived experience of Chronic Lyme sufferers. The symptoms they experience are real and when providers aren’t able come up with diagnosis or treatment, patients become frustrated and feel as though they are not being taken seriously. Mistrust in the medical community is nothing new, and for many is validated, particularly for minorities. Studies show that minority patients experiencing pain are less likely be believed by providers than white patients and more likely to be undertreated. What distinguishes Chronic Lyme from historically underdiagnosed or undertreated illness is that its sufferers are largely white and wealthy. Celebrities like Alec Baldwin, Ashley Olsen, and Yolanda Hadid are regarded as pioneers and are vocal about the injustices and hardships they have faced as a result of their diagnosis. To get a good idea of this we can watch singer Avril Lavigne’s tear-filled interview with Good Morning America linked below. While I do believe Avril’s experience, I also recognize her symptoms are shared by millions of Americans who are never heard, believed, treated, or validated in the way that she is.
Arvil’s testimony laid the groundwork for Chronic Lyme support organizations to proliferate across the internet, all pushing for the Infectious Diseases Society of America (IDSA) to change its diagnostic guidelines. These organizations gain support by controlling the narrative. Most notably many Chronic Lyme advocates often compare the IDSA’s “cover up” of Chronic Lyme with the Tuskegee Syphilis experiment.4 Sufferers of Chronic Lyme are comparing their experience to that of the 600 hundred black men who were intentionally infected with Syphilis and then denied access to penicillin treatment. In making this comparison, supporters have attempted to erase the historical and ongoing oppression of black Americans by the medical community in order to validate their own experience. And while you or I can see the situation for what it is (a gross display of privilege over minority citizens) many people, including politicians are blind to this blurring of fact and fiction.
With the medical community unwavering on their diagnostic guidelines, Chronic Lyme supporters began targeting politicians who they believed would be more understanding of their plight. Back came the celebrity endorses to raise money in order to lobby state officials to loosen diagnostic and treatment regulations. In 2006, Richard Blumenthal, then attorney general of Connecticut, launched an anti-trust investigation of the ISDA, arguing that their establishment of guidelines wrongfully allowed insurance companies to deny claims for accepted practices. It is here, in the “accepted practices” that the Chronic Lyme movement shifts from a showing of privilege’s influence on a medical narrative, to a life-threatening public health crisis. It is common for “Chronic Lyme specialists” to treat with antibiotics administered over the course of months or years. With each new prescription, these doctors are contributing to global antibiotic resistance, which disproportionality affects low-income individuals. Additionally, a Chronic Lyme diagnosis may be covering a more serious infection and consequently delay and or prevent patients from receiving proper treatment.
If you think you have Lyme, see an infectious disease specialist who uses FDA-cleared, fully validated tests for diagnosis. If antibiotic treatment does not clear symptoms, seek further medical attention from a reputable medical professional.
By Aaron Hentoff, MPH student, Yale School of Public Health