Lyme may be madness, but it’s not “all in your head”
By Lori Dennis, MA
Every day, in doctors’ offices across the United States, Canada, the UK, Ireland, Amsterdam, Australia, Sweden—in 80 countries around the world—chronic Lyme disease sufferers are told that their debilitating, destructive, multi-systemic illness is nothing more than a small nuisance condition that is really just “all in their head.”
For more than 40 years, mainstream medicine has kept chronic Lyme disease in the shadows. The disease itself, along with the political machinations that surround the illness, plunge sufferers down a complicated, confusing, and terrifying abyss—a black hole of personal anguish, conflicting medical views, widespread corruption, and unrelenting health care navigation.
Today, chronic Lyme disease has reached pandemic proportions, with a grossly underreported 300,000 cases per year in the U.S. alone, and millions suffering worldwide. This is a critical time for mental health professionals to step up for the sake of millions who are chronically ill, infirm and medically abandoned.
As mainstream medicine continues to turn its back, invalidating, denying, ignoring and even mocking the sufferers of this very real chronic illness, the mental health profession has a moral and ethical obligation to create a system of care for those who are sick and dying, who are without medical support and are left to struggle entirely on their own.
What we desperately need is a wake-up call to psychiatrists and all mental health care providers, asking them to become educated about this infectious disease and be aware that it must be used as a differential diagnosis.
How have I come to know this Lyme world so intimately?
For more than four years now I have been immersed in the land of chronic Lyme, driven by my adult son’s illness. I am a Registered Psychotherapist in private practice in Toronto, Canada, where I support chronic Lyme sufferers every day firsthand. And I am the author of the newly released book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease.
We entered ‘Lymeland’ in October of 2012, when we were forced to go on a long, terrifying and overwhelming medical odyssey. It started with a grueling 18-month journey into the offices of 20 medical specialists in New York City, each of whom missed my son’s diagnosis altogether. This hero’s journey required us to navigate my son’s declining health issues entirely on our own. We were forced to do our own research and use our intuition, determine the diagnosis for ourselves, and then traverse the slippery slope of this foreign land—an upside down, inside out, mad world where most doctors are not there to support you save for a handful of ‘believers.’
On this expedition, just like all Lyme sufferers and caregivers, we were forced to become our own microbiologist, neurologist, immunologist, gastroenterologist, infectious disease specialist and so on, in order to map out a treatment plan, all without a GPS.
Our story is by no means unique. Most chronic Lyme sufferers are ill for months, years or even decades before they come to understand the root cause of their dis-ease. Most sufferers consult with a multitude of doctors only to have to figure it out for themselves.
So this has now become part of my mission: to educate my colleagues about the devastating neuropsychiatric, bio/psycho/social, and physical effects of this illness.
When patients present with intractable depression, intractable anxiety, and a myriad of other symptoms, mental health professionals must consider that infectious disease can potentially be a root cause.
It’s not enough to only consider childhood trauma when assessing mental health. And it’s not acceptable or appropriate to make a bee line to the prescription pad as the first line of defense.
First, the potential underlying mechanisms of neurological inflammation, immunosuppression, and infectious disease need to be more widely considered.
Yes, it’s true. Chronic Lyme disease is, in fact, in your head. But not in the way that doctors intend that to mean. Contrary to medical consensus, chronic Lyme disease is not a made-up illness. It is NOT a case of malingering, Munchausen, hypochondria, laziness, or “craziness.”
Chronic Lyme disease is a bacteria-driven, multisystem, immunosuppressive, post sepsis illness, replete with relapsing fever, retroviruses and opportunistic infection.
Chronic Lyme disease is all in your head because it is primarily a neurological disease, wreaking havoc on your brain and your nervous system—as well as your heart, your liver, your kidneys, and other organs. Lyme disease patients can, and most often do, experience anxiety, depression, panic attacks, rage, attention problems, short-term memory loss, personality changes, mood swings, learning disabilities, detachment, dissociation, depersonalization, psychotic episodes, and obsessive-compulsive disorder.
Sufferers are desperate for mental health professionals (along with all other medical specialists) to understand Lyme so that they will know to consider it as a potential differential diagnosis before plying a patient with psychotropic meds which may make matters worse.
We need mental health professionals to help chronic Lyme sufferers deal with the the heavy losses they must face every day. Loss of health, loss of the person they once were, loss of independence, loss of dreams and goals, loss of missed opportunities, loss of the life they once had, loss of identity, loss of self-esteem, loss of loved ones who abandon them, loss of hope, loss of finances, loss of employment, and loss of a future.
We need mental health professionals to help chronic Lyme sufferers with the discrimination and marginalization they face. Lyme sufferers are, in fact, victimized many times over—by the disease itself, by doctors who turn their backs, by family and friends who roll their eyes and walk away, by insurers who refuse coverage, and by a medical system that negates the very existence of this disease.
I would give anything to un-learn, un-know and un-see the ugly and devious underbelly of mainstream medicine and all of its political machinations. And I would of course give anything to see my son fully recover from this life-altering illness. We continue to work at it every single day.
Several years later, we are still searching and filing away new ideas as my son’s various symptoms wax and wane. Without question, this process is expensive and draining, as it requires throwing all kinds of stuff against the wall to see what may or may not stick.
If the medical system would just do its job, the job that it’s supposed to do by training and by the very meaning of the Hippocratic oath, then perhaps this journey could be a little less do-it-yourself with a lot more certainty.
My hope is that the blaming and discrediting of millions of patients ends now and that mainstream medicine starts to do its job and stops uttering the sick-shaming statement “it’s all in your head.”
Lori Dennis is in private practice in Toronto, Canada. This blog is excerpted from a longer article that originally appeared on the website “MadInAmerica.” Click here to read the full version.