Misinformation about Lyme disease dangerously skews public perceptions of patients, in addition to perceptions of the disease, further alienating thousands of patients from families, friends and careers, as well as appropriate healthcare.
Written February 2015, posted May 2016.
This is part two (focusing on the emotional and health costs of misinformation) of a response to a horrible article challenging Yolanda Foster’s Lyme Disease diagnosis and the existence of Chronic Lyme Disease. I began this article over a year ago, but am only now finally publishing it. Because I also have Lyme disease, and that is our reality.
Part One of this article (focusing on science and credibility) was a defense of Yolanda Foster, Chronic Lyme, and (more or less) the basic tenets of science.
Even though my response in part one had mostly to do with the awful content of the article, my take on Yolanda’s role in Lyme advocacy had evolved considerably by the time that article was posted. Even though I didn’t speak to her situation very directly (and am certainly not in a position to do so), I’ve come to better understand her enormous following in the Lyme community and the growing and evolving impact she has had on patients that are facing or have faced similar struggles.
Most notable to me at the time were headlines about her missing her old self. I’m saddened for her and saddened that I and so many others I know can relate so very intimately with the feeling. We don’t need ‘proof’ of her illness because we can identify in a way that is hard to describe, and we can see what we’ve been feeling in her face. ‘Faking’ that look would be like faking Bell’s palsy. In both cases, you have to live it to have any idea how it feels. This disease is too dang specific and unimaginable to emulate.
The costs of misinformation and public hostility are too numerous and diverse to address. They include overwhelming logistical impacts to healthcare and daily life, but also, and in particular, traumatic emotional costs to already-suffering patients.
This (no longer recent) article’s passive aggressive criticisms were pointed at Yolanda, but were expanded to include chronic Lyme patients and physicians willing to treat them in similar tone and style to continuing mainstream articles and public quotes from those responsible for writing and upholding the outdated treatment guidelines discussed in Part One.
Why It Matters
The hostility of this particular article is apparent in it’s title, “Real Housewife, Fake Disease,” but the full extent of the hostility within the article may not be initially apparent to readers not familiar with the disease and its politics.
As a recap from part one, although the author implied he was objective on the topic, his claims were slanted, incorrect, and consistent with unfounded denials of Chronic Lyme by health care agencies and organizations supporting the outdated guidelines noted above. Inadequate diagnostic criteria and treatment protocols have led to delayed care for hundreds of thousands of patients each year, even though science is on the side of patients and doctors living with and adequately treating this illness.
As devastating as these limitations to care are for patients, there are also tremendous direct and indirect emotional costs from from this kind of posturing and inaccurate writing. It can feel violently aggressive to someone whose physical torment is being dismissed in a manner that is insulting, demeaning, and incredibly inflammatory (literally and figuratively).
Consequences of Public Perception
Articles like the Saunders article, and many mainstream media articles published each year, perpetuate outdated information and foster continued disrespect to patients that are suffering every bit as much, or in some cases more, than many debilitating conditions the general public is better informed about (whose sufferers are at least somewhat less subject to this type of attack).
An extensive and rigorously structured patient survey from 2013, for example, illustrates the under-recognized debilitating impacts of Chronic Lyme by comparing the impacts of multiple illnesses on patient quality of life, based on over 5,000 patient responses. The results are discussed in multiple articles on Lymedisease.org. Those authors and many more found that Lyme patients’ quality of life was lower than virtually all conditions to which it was compared and for most or all parameters considered.
Yet Lyme patients are not treated with the same respect from doctors nor, typically, the same empathy from society and peers compared to better-known illnesses (a large number of very public examples from Yolanda’s Real Housewives costars have illustrated this quite thoroughly since this article was originally written).
Commonly Wrong Impressions
The less people know about Lyme Disease, the harder life can be for individual patients, who will have to work harder for health care, work accommodations, insurance coverage, and understanding.
Misperceptions lead to unrealistic expectations of ourselves as patients and from our employers and loved ones. These are just a few examples that are rampant in the article and in daily life. These would seem to patients to be too obvious to even need to note, yet the article and many like it continue to demonstrate otherwise.
- Short courses of antibiotics can work for patients diagnosed immediately, but most patients are not diagnosed immediately, so that 4 weeks of antibiotics will not be adequate, and can do more harm than good by sending the spirochete form of the illness into harder to treat forms and harder to reach tissues and body systems. So short a time on a single antibiotic can also leave co-infections, commonly contracted from the same ticks or vectors the patient contracted Lyme from, untreated, often leading to permanent impairment.
- The ups and downs of Lyme, especially during misdiagnosis and during late treatment, can be misleading. No physician should be perpetuating the idea that functional days somehow discount the presence or extent of an illness. If bosses, loved ones, or patients set their expectations according to their best days, recovery will be greatly impeded.
- Getting diagnosed at all is extremely difficult, early or late, regardless of symptoms, making later and longer treatment all the more likely. This doctor dangerously glosses over this point and most people have no idea how difficult diagnosis is, even with ‘text book’ presentation.
Misinformation on these and many related points also leads people on the cusp of diagnosis away from the right course, further delaying treatment with potentially permanent consequences.
A recent article (at the time this post was initially written) in Psychology Today by Toni Bernard very well summarizes and refutes some of these, and other, misconceptions as they pertain to chronic illness patients. As she states, hopefully someday these all-too-common misconceptions will become uncommon.
As important as proper research would have been to the medical aspects of Mr. Saunders’ article, many resources, including mainstream articles and hundreds of patient blogs could have given him insights into patient experience that might have helped him avoid insulting thousands of patients whose suffering he clearly does not understand.
Human Aspect of Disease
Therein lies the tremendous value of Yolanda’s openness about her struggles and her symptoms. Patients, loved ones, and the public can better understand a lot about this illness through the human aspects of this disease and the unique (and ridiculous) obstacles surrounding it when they can see and relate to the similarities in her experiences.
When Yolanda posts her ups and downs, fans and non-fans alike have been taking note and are getting to see this disease as the multi-dimensional, forever-life-changing and ever-present (if not ever-visible) force that it is. Not all readers or writers see the picture clearly, but her experiences resonate enough with patients in all walks of life that the headlines patients see, positive or negative in their approach, can feel quite personal.
The type and tone of media coverage feels like it has shifted in the past year. Even through all of the recent negative press stemming from costars and other portions of the media (and although there were supportive articles readily available previously), the amount and the visibility of empathetic coverage has steadily increased.
The pain from misperceptions about our illness and the hostile attitudes we face are just like the rest of this illness, in that “you don’t get it until you get it.”
Early in my illness, as I looked further into the ‘science’ that had kept me misdiagnosed and sick I obviously became more and more frustrated, as a patient and as a biologist. I could not have anticipated how deep the impact of negative press coverage could actually be, nor that it would be so deeply and personally painful.
It is comforting to see the human side of this disease made visible by Yolanda where all kinds of people can see it and understand it.
There is something infinitely valuable to me in seeing photos that move me almost to tears through the instant recognition of the very pain (or triumph) on the face of another person that I am experiencing myself that day.
That comfort defies description as much as the pain caused by the public expressions of scorn that this doctor represents. Making her Lyme Disease Challenge bite post on Instagram last night (again this year) all the more meaningful.