Lyme Disease: Systemic Violence and Marginalization

Lyme Disease: Systemic Violence and Marginalization

            In today’s world, violence is everywhere. It is implicit and lurks explicit in different contexts, configurations, and dimensions (Narr, 2000). Violence “is both social, in that occurs in specific interactions comprised of at least two people, and unilateral, in that it entails actions by one individual against the will and well being of another” (Coates & Wade, 2007, p. 513). Violence is most apparent in cases of domestic abuse; however, it occurs in families, cities, and in the extremes of the collective (i.e., mass murder, genocide, systemic violence) (Narr, 2000). The focus of this paper is on systemic violence experienced by Lyme Disease (LD) patients. In this context, systemic violence pertains to the institutional procedures and practices that affect LD patients mentally, psychologically, physically, economically, and spiritually (Iresearchnet, 2015). More specifically, there are three key purposes for this paper. First, this paper explains how public health agencies have created a discourse around LD that has caused people with these conditions to become victims of systemic abuse and marginalization (Comstock, 2022).  The language, politics, procedures, and practices around LD promotes systemic violence in the form of overt psychiatric abuse perpetrated by medical professionals, media, and through academia (Comstock et al., 2022; Dennis, 2017). Second, this paper describes how LD sufferers have challenge public health’s discourse around LD and how public health officials deliberately try to suppress victim’s plans of resistance through more systemic violence. Finally, the last part of this paper highlights the effects of systemic violence on LD patients and how counsellors can adapt their practice to meet their unique needs.

Lyme Disease (LD) is a spirochetal infection caused by the bite of blood vector insects like ticks, mosquitoes, horseflies, and fleas (Cowden, 2013, Stone. 1990). LD can also be “transmitted in the blood of infected pregnant women across the placenta into the fetus” (Duray & Steere, 77). Prior to the 90’s, it was well documented that LD can cause serious neurological and immunological disease that can leave sufferers with several debilitating symptoms that can persist throughout their lifespan (Dupuis, 1988; Pachner, 1989; Duray & Steere, 1988; Kohler et al. 1988; Murray et al. 1992). LD often begins with a flu-like illness, then disseminates throughout the body and cause problems in the heart, liver, kidneys, along with several other organs (Dennis, 2017). LD causes many patients to experience depression, anxiety, panic attacks, short-term memory loss, attention problems, learning disabilities, mood swings, detachment, depersonalization, dissociation, and psychotic episodes (Dennis, 2017; Dupuis, 1988; Pachner, 1989; Duray & Steere, 1988; Kohler et al. 1988; Murray et al. 1992). Lyme Disease also causes cognitive impairments (Dennis, 2017; Dupuis, 1988; Pachner, 1989; Duray & Steere, 1988; Kohler et al. 1988; Murray et al. 1992). Until 1994, the CDC’s guidelines recognized LD as a serious and persistent neurological and immunological disease.

In 1994, the CDC held a conference in Dearborn, Michigan to discuss the case definition and serological testing of LD (Centers for Disease Control and Prevention, 2019). Around the time of this conference, the CDC changed the guidelines for serological testing for LD in two ways. 1) they removed two of the most highly immunogenic, primary, and diagnostic antigens (OspA and OspB) from the standard LD Western Blot (Dickson, n.d.; Centers for Disease Control and Prevention, 1995); 2) the CDC added the Enzyme-Linked Immunosorbent Assay (ELISA), a plate-based assay method designed to detect and quantify substances like hormones, proteins, antibodies, and peptides specific to LD (Thermo Fisher Scientific, n.d.). Whistleblowers and activists protested that this new two-tiered testing method was insufficient in its accuracy in detecting LD, and often misses the sickest patients (Comstock, 2022; Dickson, n.d.). In addition to changing the serological testing methods, the CDC also changed the case definition of LD.

            The CDC’s definition of LD changed from a serious persistent neurological disease to an acute illness that requires a maximum of 30 days of antibiotics (Lantos et al., 2021).  If an individual has symptoms that persist beyond the 30 days of treatment, the CDC claims that their remaining symptoms are the result of ‘Post Treatment Lyme Disease Syndrome’ (PTLDS) (Centers for Disease Control and Prevention, 2019). Since there are no treatments for PTLDS, many LD patients’ symptoms continue to progress leading to lifelong disability and death (Comstock, 2022; Dennis 2017). After the Dearborn conference, the CDC began portraying LD symptoms that persisted after their standardized treatment as being psychosomatic (Ballantyne, 2008). Many patients feel cast aside by doctors who tell them that their symptoms are psychosomatic after CDC’s treatment guideline fails (Ballantyne, 2008). Following the definition change, several CDC officials began using academia and psychiatry to discredit LD patients who remained ill after treatment.  

            In an article titled, The Biological and Social Phenomenon of Lyme Disease, CDC members Barbour & Fish (1993) Fish use passive grammatical constructions that assert that symptoms that persist after short term antibiotic treatment are the result of personality defects and not because the CDC’s treatment protocols fail to address persistent LD infection. More specifically, they claim that “factors such as premorbid personality, and a tendency to somatization, may determine the length of convalescence and the response to post infection fatigue and joint aches” (p.1613). Instead of acknowledging that persistent symptoms are from an ongoing infection, this study victimizes LD patients by passively asserting that it is somehow their own fault for not getting any better. In the same study, Barbour & Fish (1993) states that “even if the original diagnosis of Lyme disease is undisputed, lingering or recurrent symptoms, many of which are characteristic of chronic fatigue syndrome or fibromyalgia, may not be attributable to persistent infection” (p. 1613). Claiming that LD infection isn’t persistent and that a person’s personality type is the reason their symptoms persist after short term treatment, has become the motif that symbolises how the medical community views LD today.

In a study titled Implications of Gender in Chronic Lyme Disease, Shapiro & Wormser’s (2009) study found that women are most likely to believe they have chronic LD after treatment. They correlated these findings and concluded that these women most likely have other conditions that are more common to women like depression and/or fibromyalgia (FM), chronic fatigue syndrome (CFS), or other somatic conditions that don’t meet an established criteria for symptoms that the CDC deems as unexplained medical symptoms (MUS) (Bowditch, 2006; Buchwald et al., 1994; Jason et al., 1999; Shapiro & Wormser, 2009). In this passage, the CDC generalizes women as being more likely to experience psychiatric and somatic symptoms and uses their findings to minimize the physical aspects of their suffering. Women are already susceptible to external and internal stigma due to the nature of these diseases from a medical as well as societal perspective, which leads to more systemic violence (Bowditch, 2006), Shapiro & Wormser’s (2009) used grammatical gender to stereotype women as being more prone to illnesses like FM, CFS, and chronic LD based on their beliefs that these conditions are psychosomatic. Consequently, women with these conditions are labeled with psychiatric disorders and even imagined illness rather than the presence of debilitating physical symptoms (Bowditch, 2006), To further establish their stance that chronic LD doesn’t exist, this study used covert systemic violence to stereotype women as a means of minimizing the symptoms associated with chronic LD infections.

Challenging the Status Quo of LD: Institutional Resistance

International Lyme and Associated Diseases Society (ILADS)
            The systemic violence and marginalization of LD patients perpetuated by the CDC, has led to resistance on an institutional level. In the late 1990’s, an organization called the International Lyme and Associated Disease Society (ILADS) formed in direct opposition to the CDC’s claims that LD is not a persistent infection (International Lyme and Associated Diseases Society, 2021). In opposition to the CDC’s claims that LD successfully treated with 30 days of antibiotics; independent researchers worldwide have published over 700 peer-reviewed articles prove that LD can persist long after 30 days of treatment (International Lyme and Associated Diseases Society, 2017). As a result of these studies, ILADS created their own guidelines that permit health care practitioners to extend the duration of antimicrobial treatment dependent on the patients’ presenting symptoms (Cameron et al., 2014). Health care professionals, medical doctors, and naturopathic doctors who operate under ILADS guidelines recognize, that without proper treatment, LD can become chronic, cause severe disability, and even become fatal (International Lyme and Associated Diseases Society, 2021). ILADS guidelines also recognize the flaws in the CDC’s serological testing methods.

            ILADS guidelines recognize that the CDC’s two-tiered testing methods are prone to producing false negative and misses up to 60 percent of well-defined LD cases (IGeneX Inc., 2021). They recognize that false-negative LD tests and missed cases prevents people from receiving timely and effective treatments (IGeneX Inc., 2021). ILADS encourages their practitioners who treat LD to use more sensitive labs like IGeneX and Armin labs to reduce the risk of false-negative serum results for LD and other tick-bone infections (IGeneX Inc., 2021). By using more sensitive labs to detect LD and other tickborne infections, ILADS doctors can help develop more accurate and timely treatment plans (IGeneX Inc., 2021). Unfortunately, both testing and treatments are costly and rarely covered by insurance companies.

            Like all other forms of violence, the systemic violence towards LD patients is deliberate (Coates & Wade, 2007). The CDC anticipated opposition and has taken the necessary measures to conceal and repress acts of resistance (Coates & Wade, 2007). To further sustain the notion that chronic LD is psychosomatic, Dr. Edward McSweegan, a microbiologist with the National Institutes of Health (NIH) wrote an article aimed to publicly discredit ILADS guidelines, shame patients who use these guidelines, and attack activists’ who resist the CDC’s definition of LD and serological testing (Quackwatch, 2017).In the article, McSweegan used agentless (without directly acknowledging groups like ILADS) and passive grammatical constructions to target groups who look outside CDC guidelines to find out why their patients continue to have lingering symptoms (Quackwatch, 2017). He claims that groups like ILADS and their followers have used the internet and other media to barrage the public and politicians with misinformation, rumors, exaggerated claims, and dire personal stories about thousands of people who are disabled, killed, and bankrupted each year by LD (Quackwatch, 2017). McSweegan’s motif in this article was to discredit that LD causes persistent symptoms and to attack anyone who defined LD outside of CDC’s guidelines.  

In addition to writing articles to discredit groups like ILADS, McSweegan wrote a blog where he personally attacked a young woman who received treatment from a ILADS doctor. McSweegan (2015) attempted to remove this blog from his Quackwatch website; however, the article is still available on Way Back Machine, an internet archive website. In this deleted blog, McSweegan (2015) uses a condescending tone, imagery, and derogatory language to belittle the suffering of a young woman who posted about her LD treatment protocol.  McSweegan (2015) wrote a caption under this young woman’s photo that said, “below is a comment and photo from some poor crazy person who thinks she has Lyme disease” (p.4). Then, he went on to discredit her LD diagnosis by stating that “she has something—like drug toxicity and serious emotional problems—but it has nothing to do with a tick bite” (McSweegan, 2015, p.4). McSweegan (2015) went on to say “Christ, I feel ill just looking at her drug collection” (p.4). At the end of the blog, he used juxtaposition to contrast her photo of multiple medications with a photo he posted of a single pill bottle that he claimed cured his son of LD (McSweegan, 2015, p.4). By using psychiatry to belittle the suffering of a young woman with a serious health issue, McSweegan is also contributing to the stigma around mental health that affects millions around the world today.

            The CDC’s repetition of chronic LD being a psychiatric or psychosomatic condition has created a discourse most medical professionals follow in their practice.  Owing to overt systemic violence being perpetuated by members of the CDC, many Medical Doctors (M.D.) use the same tone with patients who believe they have lasting symptoms of LD. For example, Lipson (2008), an M.D., wrote a blog about how chronic LD stating that “there really isn’t any such thing” (p. 3). Lipton (2008) acknowledges that LD can cause severe late-onset symptoms. However, he believes that after 30 days of antibiotics, it is these symptoms that lead people to fall for the “quackery” of a chronic LD diagnosis (Lipson, 2008). He repeats the same derogatory terms that the NIH and CDC officers use against people who have persistent symptoms of LD.  Lipson (2008) concluded that people who believe they are sick with LD and the only doctors helping them are quacks who “have encouraged their pigeons to form advocacy groups–cults, really–that reinforce their false beliefs, encourage a sense of persecution, and continue to feed the coffers of crooked and misguided practitioners” (p.5) Sadly, the entire medical establishment in North America knowingly and/or unknowingly exposes LD suffers to systemic violence and marginalization.

Discussion

            Not only is how these medical professionals treat LD patients immoral, and unprofessional; it is also unethical for medical professionals to operate outside their scope of practice. Even though LD can exacerbate anxiety and depression, Lyme depression is often resistant to treatment (Dennis, 2017). Doctors who see people who have a LD diagnosis who present with symptoms of depression, anxiety, or mood disorders do not have permission to label these patients with psychiatric conditions (What Is Psychiatry, n.d.). To be able to diagnose psychiatric disorders, “a person must complete medical school and take a written examination for a state license to practice medicine, and then complete four years of psychiatry residency” (What Is Psychiatry, n.d.). Even if a LD patient sees a psychiatrist, a lack of knowledge on the effects of LD can lead to a misdiagnosis of mental illness (International Lyme and Associated Disease Society, 2021). That said, why do so many medical professionals label people who have chronic illness with psychiatric conditions? Namely, because the CDC has created a discourse that denies that LD can become chronic, blames patients for fabricating lasting symptoms, and this information is repeated throughout public health agency policies, academic literature, and mainstream media (Dennis, 2017). This discourse gives public health agencies, doctors, and other medical professionals the false illusions that they can go outside their field of practice and undermine sick LD patients.

            The systemic violence experienced by LD patients has led to medical gaslighting (Dennis, 2017). Gaslighting is a form of psychological abuse whereby information is twisted, selectively omitted to benefit the abuser, presented with the intent of making victims doubt their own sanity, perception, and memory (Dennis, 2017). When you receive a chronic LD diagnosis, gaslighting and sick shaming by medical professionals becomes a part of their every daily life (Dennis, 2017). Every day, LD patients are being gaslit by doctors’ offices, clinics, hospitals, along with many other health care agencies (Dennis, 2017). When people become ill, they expect to see a trusted doctor who can help relieve them of their symptoms. For LD patients, the professionals they trust resort to minimizing, denying, doubting, diverting, shaming, trivializing, and patronizing them and the symptoms they are experiencing (Dennis, 2017). Owing to the discourse on LD created by the CDC, years of misinformation, falsehoods, profit, greed, ego, and arrogance has driven medical professionals to take part in this systemic abuse against LD patients (Dennis, 2017). Instead of helping LD patients, doctors leave these people feeling as if they’re lazy, crazy, overdramatizing, misrepresenting, histrionic, hypochondriacal, malingering, and as if they aren’t smart enough (Dennis, 2017). Most of the time, doctors tell the patient that what they are experiencing is in their head and that there is nothing they can do to help them (Dennis, 2017). Dr. Kenneth B. Liegner, an ILADS M.D from the United States, states that

In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration. (Dennis, 2017, Para. 28)

Awareness of the systemic violence LD patients experience from the medical system is important for counsellors who work with this population in their practice.

Counselling Practice and LD patients

            For counsellors who work with LD patients, there are two important factors to consider. First, due to the severity of the symptoms and the medical abuse that LD patients face on a regular basis; LD patients are at an increased risk for suicide (Reinberg, 2021; Bransfield, 2017). Researchers have found that compared to those with out LD, LD sufferers have a “75% higher rate of death by suicide” (Reinberg, 2021, Para. 10). As counsellors, it is our duty to report to the proper authorities when a client discloses that they have a plan to harm themselves (Canadian Counselling and Psychotherapy Association, 2020). However, due to years of medical abuse, threatening to call medical authorities could trigger a suicidal LD patient to suffer more distress. To avoid this type of situation, a counsellor could spend time in the first sessions with a LD client going over the protocols around disclosing self-harm. Through an informed consent process, the client and practitioner could make a safety plan together that helps the client understand that counsellors are required by law to report suspicion or disclosure of self harm and suicide (Canadian Counselling and Psychotherapy Association, 2020).  Ensuring that a counsellor’s duty to report suicide is discussed early in the sessions is crucial for creating an and environment where the client is both safe and feels safe throughout the counselling process.

            Second, building a strong therapeutic relationship with LD clients is a good way for counsellors to become aware of how LD discourse has made it difficult for them to build relationships with health care workers (Rawls, 2020).  There are six counselling traits that can help create a successful therapy practice for clients who have LD (Rawls, 2020).  First, offering phone consultations can help people with LD determine whether they believe the counsellor is a good match (Rawls, 2020). During the consultation, the counsellor can do an assessment of the client and the client can ask the counsellor if they have any knowledge on LD. Second, counsellors who are familiar with the discourse that surrounds LD can help the client avoid feeling as if they are lonely, misunderstood, and judged (Rawls, 2020). Third, a practitioner’s willingness to learn about how the medical system has let them down and caused trauma can help build strong therapeutic relationships with LD patients (Rawls, 2020). Fourth, counsellors who are empathic about the trauma associated with having an invisible illness can help the clients feel comfortable enough to talk about the negative experiences that led to treatment failure in the past (Rawls, 2020).  Fifth, counsellors who have a network of referrals, can help LD patients navigate the system and refer them to health care providers that won’t re-expose them to systemic violence (Rawls, 2020).  Finally, counsellors who work with LD patients should understand that their symptoms are unpredictable and in response develop a flexible cancellation policy (Rawls, 2020).  In the end, counsellors who understand that LD patients have victims of systemic violence and marginalization by medical professionals are most likely to build strong therapeutic relationships with LD patients

            In conclusion, counsellors who work with LD patients must have an awareness of the ongoing systemic violence they face on a regular basis. Many people with LD scared to seek out therapy, as systemic abuse has led them to believe that can’t trust anyone in the medical field. Counsellors who wish to successfully build relationships with LD clients must understand where the systemic abuse began, how LD discourse has influenced how medical professionals treat LD patients, and how the language used against those who resisted mainstream discourse on LD has led to years of systemic abuse and gaslighting.  What’s more, is people who suffer from LD struggle with a spectrum of disabling symptoms that can leave them incapacitated or dead if not promptly treated. Counsellors who educate themselves with ILADS protocols, can help gather resources that can direct clients to a team of medical professionals that understand the true nature of LD. Together, counsellors and ILADS trained medical professionals can create a treatment plan that helps LD patients reclaim their physical, mental, emotional, and spiritual health that was destroyed by LD, medical abuse, and systemic violence.

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