Confronting Chronic Diseases Means Confronting The Medical Complex

Confronting Chronic Diseases Means Confronting The Medical Complex

Thousands of Americans suffer chronically from Lyme disease, a mysterious tick-born illness that has surged in pockets of the United States since the 1970s. The symptoms are as varied as the people afflicted, and conventional treatment protocols often provide scant relief.

Despite the wide range of extremely painful symptoms, much of modern medicine dismisses these patients, often implying that mental health is the root cause, not a physical disease. So what do you do when doctors believe you have an affliction that doesn’t really exist?

You can succumb to resignation and despair, or perhaps live with the cognitive dissonance between what your body tells you and what your doctor tells you. But there’s a third path: you go down the rabbit hole of alternative medicine, into the realm of off-the-wall treatments, untested remedies, and borderline pseudoscience.

Ross Douthat, conservative columnist at the New York Times, picked path number three, and what a wild ride it became. The Deep Places: A Memoir of Illness and Discovery is his account of a years-long battle with chronic suffering.

The narrative begins as he and his wife decided to leave urban life and pursue a property in Connecticut on a homestead that appears to fulfill their dreams: an idyllic country setting, a rural plot where life can slow down, they can raise their kids in stability, and Ross can leisurely putt around and maintain the grounds. Alas, it was not to be.

His illness broke into daily life, both before and after they moved, and his chronic symptoms and attempts to treat them are interspersed with a series of property incidents that anyone with a mortgage knows intimately as Homeowner Hell. After a few years of constant struggle, they sold the property at a major loss, yet were still relieved to escape it.

The Hidden Life of the Chronic Sufferer

One observation that stood out to me is that, although the chronic pain was persistent and often debilitating, the worst of Douthat’s experience was the fear of dying, of being absent from his family.

Early the next morning I woke in the hotel with a burning sensation all around my throat, and I went to the mirror and saw that my entire upper torso was as red as a Soviet banner. Then I felt the old summertime pressure on my chest, the horrible closing-up feeling in my throat, and I was sure that I was going to die there, alone in a hotel room. I called the front desk, gagging, and begged for an ambulance. As I waited for it to come, I prayed and scrolled through pictures of my kids, the fear that I would leave them fatherless returning in a rush.

Douthat quotes and comments on writer Scott Alexander: “In the same way that ‘we filter for people who are like us intellectually and politically, we also filter for misery,’ so that the suffering around us passes unheard and unseen.”

For those who have never dealt with chronic pain, getting into Douthat’s head is a truly eye-opening experience. His reflections generate empathy and compassion for the people in our communities who suffer from various chronic ailments — whether directly or by proxy, such as watching a child with a terminal illness steadily decline. One suspects many people will find great catharsis in reading this book, and discover an eloquent painting of their own struggle.

The narrative is interspersed with insightful reflections on the difficulties of being perpetually unwell. Not just the physical and medical realities — those are obvious — but also the awkward social ones:

People [often] behave well, with great generosity, in the face of a mortal diagnosis, a mental collapse, an addict’s nadir. Not least because in those circumstances there are things you can clearly do…. But when the crisis simply continues without resolution, when the illness grinds on and on and on — well, then a curtain tends to fall, because there isn’t an obvious way to integrate that kind of struggle into the realm of everyday life.

Struggling with chronic Lyme tested but ultimately strengthened Douthat’s Christian faith. A conservative Catholic, he explicitly lays claim to the comfort afforded by a worldview where pain and suffering have meaning:

To believe that your suffering is for something, that you are being asked to bear up under it, that you are being in some sense supervised and tested and possibly chastised in a way that’s ultimately for your good, if you can only make it through the schooling—all this is tremendously helpful to maintaining simple sanity and basic hope.

He observes insightfully that philosophical complaints over theodicy have it exactly backwards:

The real Christian answer to the ‘problem’ of suffering is that we have the problem all wrong, that it’s actually more mysterious when good things happen to good people than when bad things do, because if God gave His son to the cross, then a version of the same test is what every Christian should expect.

There is much wisdom here, for those with soft hearts and a listening ear. I expect this book will be a cool balm of understanding to the chronic sufferer and an eye-opening revelation of that world for the rest of us who aren’t afflicted.

Taking the Red Pill

The most fascinating part of The Deep Places was having a front-row seat to Douthat getting red-pilled to the hypocrisies, corruption, groupthink, and obtuse idiosyncrasies of mainstream medicine. Even more importantly, his reflections bring deep and timely value to our hottest contemporary global issue, one that runs parallel to, and shares many similarities with, the Lyme experience – but more on that in a bit.

Douthat is an intellectual by trade, a reasoner and a synthesizer of information and arguments. His abundance of curiosity and relentless desire to understand truths pushed him deep into the world (one might say the underbelly) of Lyme medicine and treatment protocols. The deeper he went, and the more rocks he overturned, Douthat discovered that the polished world of Official Medicine is incomplete at best, and in some places even corrupt.

The deeper I went into the world of the chronically sick, the more people I met, the more testimonials and case histories I read, and the more I familiarized myself with the scientific background of the debate, the more impossible—and infuriating—it seemed that an entire medical establishment could be ignoring, denying, and dismissing the scale of suffering taking place all around them, not in some far-distant or exotic place but in their own hometown, their children’s schools, the street or house next door.

He experienced this himself, with at least one doctor gently offering to refer him to a psychiatrist, insinuating he needed a mental health evaluation more than physical treatment. This casual insult drove him instead to pursue unorthodox answers. Despite initial skepticism, Douthat eventually became desperate enough that he was willing to try almost anything to alleviate his pain, to fight off the elusive bacteria coursing through his blood that is impervious even to a bleach treatment in a laboratory.

His self-treatment took him to magnets, audio frequencies (with great success), acupuncture (briefly), intravenous vitamin C, tons of bottles of antibiotics and natural supplements, including various herbs. He even purchased medications of dubious quality from online pet stores so he could acquire them without a prescription.

It was his inability to relieve the chronic pain or get satisfying answers from his doctors that drove him to experiment with treatments he would have casually dismissed with a scoff prior to getting Lyme, treatments that directly contradict mainstream wisdom. And he defends the scientific and methodological validity of his tactics with refreshing eloquence:

The initial task of battling my disease with half-understood medicines, the self-doctoring that I found myself doing, was in its own way intensely empirical and materially grounded—the most empirical work, in fact, that I have ever attempted in my life. Empirical, to be clear, doesn’t mean meeting the rigorous standard for FDA approval. But neither does it mean wandering a natural-foods store with a dowsing rod and popping whatever supplement the metal points you toward, or keeping a dream journal and then parsing it for subconscious codes that spell out the herbal remedies you need. Nobody who experiments on medicine’s frontiers has to sally forth at random. They can follow the wisdom of crowdsourcing, the accumulated testimony of other sufferers, attacking their own N of 1 with the benefit of a larger sample, which, even if its results aren’t subject to placebo-controlled trials or peer review, still offers evidence rather than pure guesswork, data rather than just individual anecdote.

Douthat, ever the careful needle threader, also retained the ability to see both sides of the argument. He understood that there are multiple legitimate ways to frame and interpret data, and grasped why the natural incentives and worn footpaths of mainstream medicine would develop the way they did.

Lyme Versus the Pandemic

For the average person who has little awareness of Lyme, no knowledge of its controversial history, and certainly no formed opinions about the sharp divide it’s fomented within the medical establishment over the years, Douthat’s account and reflections provide a unique opportunity for the reader to engage deep questions of health and wellness, treatment protocols, and their intersection with politicized science.

Everyone reading this has been forced to answer similar questions as of late, thanks to the real-time global debate around COVID-19. The fact that all the topics Douthat engages with regard to Lyme also exist within the hottest contemporary controversy ripped from today’s headlines provides is certainly providential.

Douthat carefully describes the two camps that rose up around Lyme within the medical community, and the cause of the rift:

The CDC guidelines essentially ratified the split already opening in the 1980s, between an official understanding of the disease and a dissenting view, between a medical establishment that felt satisfied with how it diagnosed and treated this novel-seeming pathogen and a growing population of patients and sufferers (or self-described sufferers, at least) who felt ignored, abandoned, and betrayed. It created not just two worldviews but two cultures, two concentric circles of insiders and outsiders—the inner one confident and authoritative and buoyed by institutional support, the outer one more fluid and open-minded but also necessarily more peculiar and paranoid and sometimes, frankly, gonzo in its theories and experiments.

Douthat clearly has one foot in each camp here. He obviously prefers the more formal, regimented, and systematic approach to data collection and analysis that is (often, but not exclusively) the hallmark of mainstream science.

Yet there are some lines even he won’t cross, or at least is quick to note his position on: Vaccine hesitancy, for example, is beyond the outer ranges of what he deems acceptable skepticism of mainstream science, as is the idea that Big Pharma owns the media. Although there are certainly extremes in both of these positions, readers might be surprised he retained such a reflexive resistance to both ideas.

But he also readily affirms the legitimacy of the small-scale, trial-and-error treatments that doctors and patients in the medical wild west try out. As defended above, they may not be double-blind randomized controlled trials, but they are no less methodical or useful for developing effective personalized treatment protocols.

In some ways, Lyme and COVID are very similar. Both have an underworld of treatments that are looked down upon or ignored by orthodox medicine. But their paths diverge at a hard-to-ignore reality: COVID controversies have been treated vastly differently—scientifically and culturally—than Lyme.

It’s understandable if mainstream doctors and public health officials are skeptical of various proposed treatments for COVID-19. But what’s hard to explain charitably, is all the censorship, suppression, and propaganda against them and in favor of the vaccines.

Douthat describes two broad camps of doctors who treat Lyme patients with varying degrees of openness to unorthodox treatment protocols. Imagine if the entire public health establishment came down with an iron fist on all the Lyme treatments with which the latter camp researched and experimented.

It’s one thing to respond to unapproved treatments or experiments with silence, or even disparagement. But imagine if the bureaucracies went even further, if pharmacies and state medical boards stepped into the heretofore sacred doctor-patient relationship and blocked their ability to prescribe disapproved drugs.

Imagine if all of Big Tech and the social media companies colluded to suppress any content that questioned the Approved Narrative or expressed support for alternative Lyme treatments? What if YouTube updated its official community guidelines with reference to a drug commonly used to treat Lyme and forbade the world from discussing it on their platform? What if they deleted footage of a credentialed physician testifying to Congress about the evidence supporting his protocols?

All of these things have happened in the last 18 months with COVID-19. The level of censorship and ostracizing in the COVID-era is utterly shocking and unprecedented. Thank God it hasn’t happened with Lyme, for the sake of thousands of patients’ health and the medical freedom of practitioners. Why is it happening with COVID?

Did He Find Relief?

What fascinates and flummoxes is Douthat’s Lyme experience so clearly illustrates and confirms an insight many have had COVID and other controversial topics: The primary disagreement is almost never over facts, but over narrative and framing.

The structure, the paradigm, the context in which we place and organize facts relative to each other is the key driver of our interpretations and conclusions, not the facts themselves. In one sense, this is an obvious truism; no serious or thoughtful person disputes it. Yet that recognition gets lost amidst all the appeals to authority, the demands to “just trust the science,” to “wear the d-amn mask,” etc.

“The science” has not really ever been the main problem for the so-called COVID skeptic crowd, although there certainly are disagreements about the accuracy and relevance of the data: Can we trust the official death tallies? Are we in a “casedemic?” Do high PCR cycles inflate the numbers and generate unnecessary fear? Are hospitals classifying patients accurately? Is the VAERS data drastically under-reported?

For those who distrust the CDC, NIH, WHO, and the amalgamated, miasmic sludge of advocacy from corporate journalism, doctors, local public health officials, politicians, Big Tech and Big Social, the most offensive element of their output is not the outright lies, the deceptive nature of their unified propaganda about the science, but what is missing entirely from the public discussion. That’s the obvious profit incentives for the pharmaceutical companies combined with the liability protection provided by the state, the myriad other costs to our pandemic response – be they economic, psychological, educational, social, and medical-but-not-COVID-related – and the dedicated, fingers-in-the-ears refusal to acknowledge that official guidance seems to shift every five minutes.

Was Douthat’s descent into the medical underworld successful? Did he cure his Lyme disease and beat back the chronic pain? You’ll have to read it to find out.

And read it you should. If you suffer and need an eloquent reflection to put words to your afflictions, or if you are a blessedly healthy person who could benefit from a more empathetic understanding of your fellow man, this book is worth a read. If you tend to believe the claims of unorthodox medicine and wonder if a highly educated, wealthy, WASP of the elite intellectual class could possibly come to share that openness, read this book.

If you are in the tribe that believes whatever the CDC puts in its press releases is the sum total of objective science, you should definitely read this book, although the struggle to shed your preconceived notions may be painful. Hopefully, this won’t be a chronic affliction, but a short-term cleansing pain.

Originally Posted on: https://thefederalist.com/2021/11/05/confronting-chronic-diseases-means-confronting-the-medical-establishment/
[By: Seth Simmons

Written by:

9,952 Posts

View All Posts
Follow Me :
%d bloggers like this: