Chronic Lyme Disease

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It is not common in the United States to consider medicine a socially or culturally influenced field. Instead, both doctors and patients alike like to think of medicine—both research and treatment—as purely science and therefore deeply evidence-based and trustworthy. The extent to which diseases can be as much social construction as physical impairment is therefore often overlooked. There are few diseases that make this more apparent than Lyme Disease, especially when it becomes chronic. This paper will examine Chronic Lyme Disease through a social lens.

According to Aronowitz (2011), Lyme’s Disease has a very different social meaning in Europe than it does in the United States. In fact, although it is assumed to be a well-understood disease in the United States, and is treated as such, the U.S. understanding of Lyme Disease is quite controversial outside of North America. Aronowitz explains that the medical understanding of biology restricts how broad a definition of a disease can be, yet labeling something as a “new” disease depends on a host of different factors that have very little to do with medicine, biology, or even the best interests of the humans affected. In particular, societal values, current events influencing the medical industry at the time of “discovery,” and specific interests (often financial) of the medical establishment can determine the categorization of disease. So, while Lyme Disease was apparently discovered in New England in the 1970s, European doctors had been studying a disease induced by tick bites by 1910. When a similar disease started to be seen in patients in the United States in the 1970s, it had enough differences in the European version that doctors insisted they had discovered a new disease, which formed the basis of our contemporary understanding of Lyme Disease. The controversy became more complicated with the introduction of vaccination for the disease. From this history, Aronowitz points out several conclusions we can gather about the social understanding of disease in general. First, recognizing and defining a new disease does not follow any set of established rules. Second, during these controversies, the medical establishment should work to discourage unreasonable public fear of the disease, especially while it is still not well understood by medicine. Lastly, medical researchers and professionals should recognize the diversity possible within a disease.

In a companion piece to Aronowitz’s “The social construction of Tick-Borne Disease,” Weintraub writes of the human-face of the disease through a personal narrative of her own experience with the disease. She aims to highlight the bias within the medical establishment attached to Lyme Disease. Part of the problem is the downplaying of chronic symptoms within patients. Weintraub encourages us to believe patients with chronic symptoms, and not try to fit them into a narrow, more widely accepted, conception of what Lyme Disease does or should look like. The combination of these two essays emphasizes the social construction of Lyme Disease. The fact that two continents with relatively similar medical technologies and training could have such different reactions to similar disease points to how culturally dependent understandings of disease are. The societal understandings of medicine and disease do not typically account for social and cultural connotations. This paper will seek to more thoroughly understand these social connotations with respect to Lyme Disease. In particular, it will attempt to answer the following questions: How does the social construction of this disease impact the lived experience of those suffering from the disease? Do people with Lyme Disease in America experience the disease differently than those suffering from it in Europe?

Feder et al. (2007) examine the use of antibiotics in treating Lyme Disease. It is well accepted within the (American) medical community that antibiotics can cure Lyme Disease, although the experiences of many suffering from Lyme Disease suggest otherwise. The symptoms of Chronic Lyme Disease are diverse and wide-ranging, affecting various the body, mind, and emotional well-being of patients. The medical establishment is hesitant to accept the failure of antibiotics in eradicating symptoms in those with Chronic Lyme Disease. Therefore, the language they use to describe the phenomenon of Chronic Lyme Disease—intentionally or not—downplays its validity and its seriousness. Researchers call the symptoms that remain after antibiotics “mild and self-limiting” (Feder et al., 2007, p. 1422). The terms for Chronic Lyme Disease also dismiss its importance: the symptoms are called “post-Lyme disease symptoms” when they persist after antibiotics, and, in the instances in which they remain longer than six months following treatment of the disease, “post-Lyme disease syndrome” (Feder et al., 2007, p. 1422). Although the terms used to describe the symptoms of Chronic Lyme Disease in effect reduce its legitimacy as a true disease, they also acknowledge its existence by giving a name to the condition.

As Feder et al. (2007) make clear, the American medical establishment is very resistant to acknowledging the legitimacy of Chronic Lyme Disease and the dramatic ways it can affect its victims’ lives. Why might this be? Johnson & Stricker (2010) provide a quite comprehensive overview of the many reasons Chronic Lyme Disease is often rejected by medical and insurance companies. These reasons range from conflicts of interest on judging panels to flawed clinical trials to purposefully shielding the public from the severity of the threat of Chronic Lyme Disease. In 2008, the Attorney General of Connecticut—a state that has seen the largest outbreak of Lyme Disease—launched an investigation into the development of the Infectious Diseases Society of America’s (IDSA) treatment guidelines for Lyme Disease. The investigation showed that the process, rather than being determined by the best interests of the patients, was largely influenced by conflicts of interest that unjustly eliminated contrary opinions and evidence that might call into question the IDSA’s determinations. This case demonstrates the need for having a place for controversy and uncertainty within the medical community, rather than minimizing controversy at the expense of patient health. Johnson & Stricker’s article on the investigation argues for the need for antitrust laws, due process, empiricism, and fairness in creating any medical guidelines.

The conflicts of interest and financial interests involved in determining the status, treatment, and reception of Lyme Disease in the United States have led to resentment and paranoia. Both of these sentiments can be found quite clearly in a blog post titled “The CDC’s greatest coverup & what they don’t want you to know” (2015). The post points out that the Center for Disease Control (CDC) acknowledges a likely 300,000 new cases of Lyme Disease each year, making Lyme Disease as prevalent as breast cancer. The post admits that there are some functional problems with diagnosing and treating Lyme Disease. In particular, diagnosis can be quite difficult, as symptoms may be difficult to pinpoint. The wide-ranging and often elusive symptoms resist easy diagnosis. If the infection is not tested within three days of the tick bite, antibiotics may be ineffective and even weaken the body’s natural abilities to fight the disease. This brief onset time is the reason that Lyme Disease so often becomes chronic.

The blog post is quite revealing about an important sector of public opinion concerning the medical establishment’s letdown of people suffering from Chronic Lyme Disease. It points out that some victims have to visit 30 or more doctors to even get a diagnosis. This is in part because tests are often inconclusive and inaccurate. However, more ominously, it is also in part the fault of the doctors themselves, who are feeling pressure to ignore the threat of Lyme Disease. The post claims that the CDC and insurance companies have joined forces in a conspiracy against public awareness, and subsequent treatment, of Lyme Disease. The CDC and the IDSA deny the existence of Chronic Lyme Disease. The post argues that this is because of pressure from insurance companies, who avoid anything labeled “chronic” because of how long-term and expensive it is to treat. Insurance companies are allowed to deny coverage to those claiming to have Chronic Lyme Disease, and this adversely affects the doctors who resist this collusion and treat victims of Chronic Lyme Disease. The post points to a case of a doctor in North Carolina even losing his practice (and eventually losing his license and declaring bankruptcy) for treating Chronic Lyme Disease after being sued by insurance company Blue Cross Blue Shield for giving antibiotics to patients with Chronic Lyme Disease. The post argues that part of the problem is that ticks are not the only way to transmit the disease, and there is even some evidence that it could be sexually transmitted or gestationally transmitted from pregnant mother to child. Another problem is the denial that there could be multiple strains of Lyme Disease.

Although the blog post may sound a bit like a conspiracy theory, it is revealing nonetheless. It sheds light on the fact that the problem is much more complicated than the American medical establishment wants to admit. More importantly, it highlights the fact that victims of Chronic Lyme Disease often feel betrayed and dismissed by their doctors and struggle to find treatment—let alone treatment covered by their insurance companies.

The bias of the United States’ view of and approach to treating Lyme Disease can be seen quite clearly when compared to the treatment of the disease in Europe. In England, those who suffer from Lyme Disease experience the disease quite differently than those in America. The authors conclude that English doctors balance the danger of Lyme disease against the restorative benefits of time participating in outdoor activities in the countryside, where they come into contact with ticks. Therefore, they do not tend to caution patients against time outdoors, and patients do not decrease their time in the countryside, exposing themselves to ticks, even after they have been bitten or suffered from Lyme Disease. Notably, neither doctors nor patients seemed to show preferences for taking precautions against tick bites while in the countryside. This source presents a contrast with the controversies surrounding the disease in the United States. Lyme Disease is treated as purely medical, and there is no social stigma.

Clearly, the social effects of Lyme Disease, and especially Chronic Lyme Disease, in the United States must be considered. Rebman et al. (2015) supports the idea of Lyme Disease as much a social construction as a medical condition. The study records clinical and sociological data from several groups of people who suffer from the disease (and who have suffered from the denial of their disease by the medical community). The researchers identified three main themes in the patients. First, after suffering from the disease, the victims were forced to define a “new normal” to account for their fundamental shifts in the way they interacted with the world. Second, the uniqueness of Lyme disease’s symptoms led to certain invisibility of the illness and its symptoms alike. This invisibility impacts the support the victims receive in complicated and varying ways. Interestingly, Rebman et al. also found that many of the patients suffering from Lyme disease blamed themselves for their condition. They indicated that they felt responsible for their illness; the authors describe this as resembling a feeling of guilt. The authors surmise that this feeling arises as a result of the way the medical community treats people suffering from the disease. They argue that this negative treatment and the emotional consequences it causes have a negative impact on the day to day social existence of those suffering from Chronic Lyme Disease.

So far, this paper has demonstrated the scholarly interpretation of the relationship between Chronic Lyme Disease and the medical community. What is so far mostly implicit in this discussion is the fact that this rejection of the legitimacy and seriousness of Chronic Lyme Disease has detrimental effects on those suffering from it. These effects range from the minor—frustration to not being taken seriously by doctors—to the life-altering—being denied coverage by insurance companies because of the stigma and low status of the disease. The dramatic personal difficulties faced by those with Chronic Lyme Disease were illuminated to me by my friend, Martha. Martha has been suffering from Chronic Lyme Disease for almost ten years, and I interviewed her about her experiences with the disease. Martha shared many of the frustrations articulated in Organicolvia’s (2015) blog post. Because her symptoms were relatively minor at first, she waited several weeks after their onset to visit a doctor. She thought she may have the flu or a similar illness and finally visited the doctor to be tested for that. The doctor concluded she did not have the flu, and sent her home advising bed rest and suggesting she return in another week if her symptoms persisted. While Martha was of course frustrated at a lack of diagnosis following her first visit to a doctor, she told me that she could not have anticipated her frustration six months later, after she had seen four doctors and still failed to receive any diagnosis that matched how she felt. She began to take matters into her own hands, doing extensive research on the Internet. When she found an online community suffering from Chronic Lyme Disease (and joining together to complain about the failure of the medical establishment to help them), it was the first time her disease made sense to her. Martha brought her self-diagnosis to her doctor, therein beginning a years-long struggle to convince her doctor to acknowledge the severity of her Chronic Lyme Disease and treat her in any useful way. Almost a decade after this battle began, Martha has largely made peace with her disease. She has adjusted her lifestyle in the knowledge that she will probably never recover. Her final ongoing battle is with the shame and ensuing frustration she feels when going to the doctor, or even, at times, when telling another person about her disease. She acknowledges that she should feel no shame at being the victim of a disease, but continues to feel like she is fighting for her doctors to take her seriously.

In conclusion, many factors affect the social meaning of Chronic Lyme Disease in the United States. It is important to acknowledge how the social connotations of the disease affect its victims. Medical companies and organizations, including insurances companies, should put aside their financial interests in favor of helping those whose lives have been ruined by Chronic Lyme Disease, and made worse by the social stigma of suffering from it.

References

Aronowitz, R. &  Weintraub, P (2011). The Social Construction and Human Face of Tick-Borne Disease. Institute of Medicine. Washington, D.C.: National Academies Press.

Feder, Jr., B. J., O’Connell, S., Shapiro, E.D., Steere, A.C., & Wormser, G. P. (2007). A critical appraisal of ‘chronic Lyme Disease.’ New England Journal of Medicine, 357(14), 1422-1430.

Johnson, L. & Stricker, R.B. (2010). The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about the development of clinical practice guidelines. Philos Ethics Humanity Med. 5(9) doi: 10.1186/1747-5341-5-9.

Marcu, A., Uzzell, D., Barnett, J., O’Connell, S. (2013). Experience of Lyme disease and preferences for precautions: Cross-sectional survey of UK patients. BMC Public Health 13(1), 1-7.

Organicolivia (2015). Lymes Disease: The CDC’s greatest coverup & what they don’t want you to know. Collective Evolution.

Rebman, A., Weinstein, E., Aucott, J., & Leonard, L. (2015). Living in Limbo: Contested Narratives of Patients with Chronic Symptoms Following Lyme Disease. Qualitative Health Research. December, p. 1-15. DOI: 10.1177/1049732315619380.