An article in “The Mighty,” is a straight forward commentary on what many Lyme/MSIDS patients go through in their quest for medical treatment by medical professionals who verbally abuse them.
There is a term in clinical psychology known as “gaslighting.” Its origins are the 1938 play and 1944 film “Gas Light.” Gaslighting is “a form of mental abuse in which information is twisted or spun, selectively omitted to favor the abuser, or false information is presented with the intent of making victims doubt their own memory, perception, and sanity.”
Gaslighting, akin to “sick shaming” in the case of chronic Lyme disease, is a brilliantly orchestrated method perpetrated by those in power who either purposely or inadvertently damage your trust in yourself and in your own reality by making you feel both “crazy” and “wrong.” When you have an illness like chronic Lyme, it’s easy to be the victim of this tactic. Chronic Lyme disease is a perfect yet tragic example of this ploy in action, executed by a global cast of characters against the most vulnerable among us.
This sounds so outrageous. And it is. But as we all know, truth is often stranger than fiction.
Every single day in every corner of the world, Lyme patients are being gaslit in doctors offices, hospitals, clinics and the like. In fact, the very professionals in whom we place our trust, those we hope will care about our health and well-being, are doing far more harm than good by minimizing, trivializing, denying, discrediting, doubting, diverting, blaming, shaming, and patronizing Lyme patients and their symptoms.
The years of falsehoods, misinformation, greed, profit, ego, and arrogance driving this behavior carried out by the medical powers-that-be — the very people who have prevented chronic Lyme disease from getting the medical attention it so deserves — have turned Lyme disease into a universal experience of gaslighting, sick shaming, blaming and the discrediting of millions of patients worldwide.
Not a day goes by when Lyme patients, in response to their cries for help, are told by their doctors that they can’t possibly have chronic Lyme disease because…
“I don’t believe in Lyme…You were nowhere near a tick-infested region, were you?…I would have tested you for it if I thought it was Lyme…Something would have shown up in your blood test…Your blood tests were indeterminate, so you can’t have Lyme…Your blood tests were negative so you don’t have Lyme…It’s a false positive, you don’t have Lyme…You got better after a round of antibiotics so it’s cured…This disease is very rare…There is no Lyme in this country, city, town, region…If you didn’t see the tick, then you can’t have Lyme…Did you have a rash?…If you didn’t see the bull’s-eye rash, then you don’t have Lyme…It’s post-treatment Lyme disease, don’t worry, it will resolve itself…It’s post-treatment Lyme disease syndrome and there’s nothing more we can do…Go home and find some distractions…Everyone with Lyme has made it up…It’s a figment of your imagination…There is no such thing…The internet is wrong…Stop Googling…When did you get your medical degree?…With all due respect, Google is not medical school…Remember, I’m the one with the credentials…I can assure you that ticks don’t cross the border…You didn’t go hunting in the highlands of Scotland, did you?…You don’t have an elevated white blood cell count so you can’t have Lyme…You don’t have arthritis so you can’t have Lyme…Your joints are fine, aren’t they?…No one gets headaches with Lyme disease…Lyme doesn’t cause your symptoms…I don’t know anything about Lyme disease but I can tell you, you don’t have it…No one can have that many symptoms…No one can be that sick…You look too good…You’re a beautiful girl and you don’t need this illness to get attention…It’s just menopause…These are just normal signs of aging…Everyone feels tired…You’re just lazy…Get some fresh air and exercise…You just need to get out and get busy…You’re depressed…You’re stressed…You’re just feeling anxious…It’s likely an inherent weakness…You just need to think positively…It’s all in your head…Stop dwelling on your problems…Try praying…If you just stop thinking about it, you’ll feel better…Are you familiar with Freud?…Here, I’ll refer you to a psychiatrist…An antidepressant and some therapy should do the trick.”
These inane pronouncements are made by doctors daily causing Lyme patients to feel like they’re “crazy,” lazy, not smart enough, overdramatizing, misinterpreting, histrionic, hypochondriacal, malingering, and just plain wrong. And to make matters worse, they are rarely given any alternative diagnoses and treatment solutions that are of any use. The best many doctors can do, it seems, is to tell their patients it’s all in their heads and then offload them to a psychiatrist for meds and therapy.
I can assure you that chronic Lyme disease is very real, the pain Lyme patients are forced to endure is very real, and the number of people affected by the disease — both directly and indirectly — is growing exponentially while the medical establishment continues to do very little to address it.
You may ask, “Why is this happening? Why would doctors go to such lengths to dismiss and shame their patients?”
The best I can say is the answers are complex. Just know that it’s a 40-year-old, multi-faceted construction of falsehoods, obfuscations, opportunism, trickle down effects, herd mentality, and the like, orchestrated by those who have much to gain by gaslighting and a great deal to lose if they don’t.
Lyme Madness™ chronicles the journey of Lori’s son’s chronic illness and their headlong plunge down a confusing, overwhelming, and mind-bending rabbit hole to help him recover his health. It reflects their eighteen month experience of desperately trying to procure a proper clinical diagnosis; it chronicles the subsequent months they spent searching for treatments that would hopefully make a difference; and it details the daily researching and seeking of a myriad of alternative approaches for his ultimate healing – all to release him from the unsympathetic grip of this complex neurological condition.