disease

Diseases are just stories we tell ourselves.

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  short-story_1950306cRecently, I was explaining to a patient the difference between her diagnosis from a western mainstream doctor, and the diagnosis I had just given her, which emerged from an examination based in Traditional Chinese Medicine (TCM).

"Diseases are cultural concepts," I said. In mainstream Western medicine, certain symptoms, signs, and laboratory tests are grouped together because it makes sense to congregate them given that view of the body. We clump that fact pattern together, call it a disease, and give it a name. Eastern medicine may likely have no analogue, not because the disease had not been "discovered" by TCM doctors, but because when looking at a person from an Eastern perspective, it makes no sense to clump those findings all in one pile; in TCM, some go in one pile, and some in another, and neither fully replicates the Western diagnosis.

Which is a good thing. One of the greatest failures of western medicine (aside from its obeisance at the altar of Mammon) has been its failure to recognize that a disease is not a creation of biology -- it is a creation of culture.

On the personal level, a disease is, in fact, a story we tell ourselves about ourselves. It is one of the many myths we use to make sense of our lives, to collate and correlate all of the data we collect into a coherent whole, a narrative that relates ourselves to our world sequentially in time and which gives meaning to our lives.

From this perspective, then, it is the doctor's job to provide the story in which the patient immerses themselves. Our important knowledge base is less one of laboratory values and abstruse structures on x-ray than it is the particular narrative in which which each patient can find association.

For example: If I tell a patient that they have arthritis, without any qualifiers, their reaction can vary tremendously. This is because of the associations which that word has in their mind. One patient may immediately think of rheumatoid arthritis, which erodes joints and may leave its victims disabled and wheelchair-bound, fighting constant pain. Another patient may assume I'm referring to osteoarthritis, the wear and tear of joints which eventually effects us all, and may only display as some stiffness and a mild loss of range of motion. I can watch, physically, as they respond to their interpretation, sinking into themselves in resigned defeat or shrugging their shoulders as if to unburden themselves of a fly. Each patient is telling themselves the story which they will be living, and reacting accordingly.

Most people these days are familiar with the concept of a placebo -- a physiologically inactive intervention, such as a sugar pill, that a patient takes and it miraculously begins to heal them. Placebos can be extraordinarily powerful interventions, to the extent of curing people of cancer. The key aspect of the placebo effect, though, is that the patient cannot know that they are taking a placebo.

The cause of the placebo effect is that it is an item that a person can use to change the sequence of their narrative. To understand how that can be so, we must first take a shallow dive into Jungian psychology and the realm of mythology. Joseph Campbell, in his book The Hero With A Thousand Faces, describes what he calls the "monomyth." This is the tale of the hero, who leaves his safe home, fights monsters and giants, faces death (and dies), and then returns to his world and his home as a more complete (healthier) individual. This is a story that exists or has existed in virtually every culture over mankind's history, and regardless of the time, culture or language, all of these heros' journeys have common elements.

This is the journey of individuation that we all undertake during the course of our lives, and it may be a trip that we take several times in several ways. The hero's journey is also the path that many people follow when faced with a disease. I have seen patients replicate this journey many times over the past 20 years, and the pattern I have observed hews closely to the Campbellian outline.

There are several stages in the monomyth. The first is the "call to adventure," which in a clinical setting is best seen as the time of diagnosis. The hero (patient) often resists this call (denies the diagnosis), but after rising to begin his or her journey, one of the first encounters that our hero has is with a supernatural or magical helper, who often gives the hero a talisman or artifact that will aid him in his quest. Again, in the clinical context, the supernatural helper is the doctor (or magician, shaman or priest in other cultures), and the talisman in this culture is most likely to be a pill, herb, or chiropractic adjustment.

The exact nature of the talisman is unimportant, as is the factual existence of the powers that it is claimed to possess. What is most important for the hero (patient) is that "protective power is always and ever present within or just behind the unfamiliar features of the world. One has only to know and trust, and the ageless guardians will appear," Campbell states.

This is the power of placebo, and indeed, this is part of the power of every therapeutic intervention, regardless of its physiological properties. In fact, in the case of many interventions, the physiological properties are far weaker than the magnitude of its therapeutic effects. But because these are talismans imbued with protective properties, given to the patient by a figure representing a force stronger than their own, their power is magnified.

What the drug/herb/adjustment is really doing, far more important than chemical or mechanical changes, is giving the patient the power to change the outcome of their narrative. The feared enemy is no longer stronger than the hero and their playing field is now levelled.

Thus, the outcome can be changed, literally, in the patient's mind.

This approach -- seeing the disease process as a story we create, or co-create with our environment, is hardly a novel or new one. It is, however, a largely forgotten one, in a day and age when diagnosis is based primarily on laboratory testing rather than observation and interaction with the patient.

For patients, this realization that our diseases stem, to a great degree, from how we interact with our internal and external worlds can be an initially frightening revelation. One might accuse me of cruelty to suggest that a person with cancer, or heart disease, or even MS, is in some way, responsible for their disease. My words, though, are less the whip of admonishment than they are a call to hope.

Taking responsibility for something is the first step in being able to manage and control it. If a disease is declared genetic (the scientific version of "an act of God"), it becomes something impossible for the patient to overcome, because, who, after all, can defy the almighty Gene? (This approach, by the way, is also a very good way to deify the doctor for his own benefit, but that's a tangent for another day).

If you can claim ownership and responsibility for a disease, then you are simultaneously reclaiming the capacity to change it's course. You are changing the narrative of your disease. You are changing from victim to hero.

Of course, that alone isn't enough. You have to change whatever needs to be changed, behaviorally, mentally, emotionally, in order to change the actual course of your disease, and the talisman given to you by your doctor will only help you so much. The rest you must do yourself.

Any disease, your disease, is just  a story you are telling yourself. And whether the outcome is tragic or triumphant is entirely up to you.

The secret of my success: Three principles of disease.

The secrets of health were known long before modern medicine came along. When it comes to understanding health and disease, there are three fundamental precepts which must be acknowledged. These principles fly against much of what passes for common wisdom in medicine, but understanding and utilizing these principles have been the secret to my ability to find solutions for my patients where others have failed.

The first tenet is that a disease cannot exist in isolation. The way we structure our language about disease has always bothered me, because it reflects the outdated  view that a disease is a thing, an entity that we must combat and control. When we are ill, we say that we "have" the disease; "I have a cold," or "I have arthritis," as if our ills were something that we pick up and plop into the shopping bag of self.

Nothing, of course, could be further from the truth. Diseases are not isolated entities, they are ongoing processes in which we play a part. Even with infectious diseases, illness cannot exist separate from our participation in the process. How can a fever exist without a body to become hyperthermic? Where is a headache without the head? Where is the bruise without the swelling? How can a cancer exist without the  cells to grow into a tumor?

There is no I, only We.

As I keep telling my patients (and anyone else who will listen), there is no "I", there is only "we". As I type this, millions of commensural bacteria are helping me to digest my last meal, eliminating the detritus on my skin, and challenging not-so-friendly bacteria that want to get into my lungs. Without them I would be dead. Extending the sphere of my existence outward, the air filling my lungs and the food filling my stomach are all part of my health environment, and exert profound influences for good and ill.

What it comes down to is that any disease is a dance between ourselves and our external and internal environment. For better or for worse, we are full participants in our disorders. Unfortunately, the culture and custom of medicine leads us to distance ourselves from our illnesses, thereby putting many of our tools for healing out of reach as well.

The second tenet is that, disease, as well as health, is not static. The fluctuation from healthy to ill, and back to healthy again, even within the limited range of a chronic illness, is a constantly changing process. But again, our language reflects a fundamental disconnect with this particular nature of illness. Labels that allegedly describe a disease, such as arthritis, or irritable bowel syndrome, attempt to tag and bag something which exists only as a process. Arthritis isn't a thing; it is the gradual erosion of joint surfaces as the body fails to create new joint material to replace what is worn away. Irritable bowel syndrome isn't a bucket full of symptom post-it notes, today presenting as diarrhea and fatigue, tomorrow as constipation and depression. IBS is the process of opportunistic bacteria overtaking the intestinal milieu, altering the environment to better suit their needs.

Again, by misrepresenting diseases as static entities rather than ongoing processes, we lose the ability to alter them. You can only change a "thing" by cutting away at it, or attaching things to it, or by removing it; a process, however, has multiple points of entry where  changes can be introduced, any one of which that can result in an altered process with an entirely new outcome.

A disease is only a disease because we make it so.

The third tenet is the most important, and perhaps the most difficult to grasp, because to understand it we have to step outside of our cultural predispositions. The essential fact is that any disease is primarily a social construct. That is, we have decided to connect disparate data points together, each point representing a symptom, or lab value, or observation, and give this conglomeration a name, not unlike the ancients would look at the night sky and create pictures from points of light connected only in the imagination of the astronomer. These constructs are created at the convenience of the tools we have on hand; in the case of a disease, it reflects the tools which we have to address it, whether that tool is a drug of unknown mechanism in the case of the modern MD, or the pantheon of gods and their consorts, in the case of the ancient astronomer. Were it not for the story of Orion, that constellation would not exist; similarly, were it not for the existence of the microscope, there would be no such thing as a Staph infection. Our tools of observation and correlation are what make diseases possible.

Which is why different cultures, with different analytical systems, have different diseases. The Western diagnosis of clinical depression does not exist in Chinese medicine. Multiple Eastern diagnoses partially overlap the clinical entity we call "depression," but none are an identical (or even close) match.

The same culture will also alter diseases with the progress of time. What we now call fibromyalgia has a long and storied history going back over 100 years. But back then it had a different name, and different aspects of it were emphasized according to the prevailing views of biology at the time. What you have today is certainly not your grandfather's fibromyalgia.

Interestingly, I think that this is one of the reasons that the chiropractic profession proved to be such a threat that the AMA has spent over 100 years and millions of dollars trying to quash it. For the first time in the history of Western medicine, the chiropractic paradigm of illness focused on the key intersystemic command and control system of the body -- the nervous system. To do this, early chiropractic researchers developed a new language and a new allegory to explain an individual's health status. This was during the time when medical doctors were still bloodletting their patients and dosing them with arsenic in the race to rid the body of "vile humors," and such an entirely different way of thinking posed an intolerable threat. It had to be stopped.

The man with the empty fire.

Politics aside, consider for a minute how applying these fundamental precepts of disease can dramatically alter our approach to health problems.

Let's take, for example, a possibly fictional patient sitting in my exam room. He has come to me with a history of uncontrollable high blood pressure. He has, per his MD's instructions, dropped excess weight and engaged in a regular exercise plan. For the most part, he is eating what the medical profession calls a "heart healthy" diet -- lots of vegetables and grains, and avoiding "unhealthy" fats and cholesterol-containing foods, like eggs.

Despite his efforts, his blood pressure remains high, and is only precariously controlled by an unhealthy brew of anti-hypertensive medications, providing a dose of fatigue and flat-lined libido on the side. This patient is not a happy man.

The process of figuring out what is wrong begins with a recombination of the data. For the most part, I am not availed of any secret information that wasn't also available to the physicians preceding me. But perhaps I look at it in different ways.

For example, I've noted over time that the majority of people with high blood pressure have a very distinctive feel to their pulse. So why is it that the patient in front of me presents with uncontrollable high blood pressure, yet his pulse lacks that unique signature? My further examination, while not necessarily uncovering anything new, will occur in the context of trying to answer that question. And slowly, the dots will connect in a constellation that hasn't been seen before. I note a ruddiness to his complexion. He complains of fatigue, yet speaks in a loud, emphatic voice and exercises regularly. He is a large man, and despite his controlled diet, demonstrates a rotund abdomen. He is firm, with a layer of cutaneous fat overlying muscle. In my midwest childhood, we called people like that "milk fed." Everything about this man speaks of paradox.

So what's going on here? Let's ignore the diagnosis that the man walked in with, and think about the person himself. The most obvious thing about this man is that he is on fire. He is active, engaged, refusing to sit still, and refusing to accept his condition. Yet underneath that, there is...not much. An empty stomach. Fatigue.

What else in the world is like this? My mind is immediately drawn to the image of a cup of alcohol burning. The flame is hot, but not long lasting, and the flame is difficult to see. Unlike a wood fire, long lasting, even tempered, creating coals and ashes as it burns, this fire is empty underneath. And that -- an "empty fire" -- is what describes the man in front of me.

So what would cause that sort of blaze in a human? Well, an empty fire depends upon ready fuel that is easily combusted and leaves nothing behind. Which is exactly the sort of fuel that this man has been using. His "heart healthy" diet is dependent on grains -- in other words, easy-to-access carbohydrates, which are burning and leaving nothing of value behind.

So I tell my patient that we are going to modify his diet. For him, a paleo diet makes more sense, with its slow-burning fats. We discuss the particulars of his plan, and send him off with instructions to monitor his blood pressure daily. And, sure enough, a month later, his blood pressure is out of the danger zone and stabilizing at a healthy level. He owned his involvement in his disease process, and danced with it, eventually leading it off the dance floor altogether.

Do not mistake this approach to finding solutions for an intuitive one, because it is actually highly analytical. As I go through my day, I am constantly reminded of the words of scientist/philosopher Alfred Korzybski.

"The map," Korzybski said, "is not the territory." And when it comes to human health, it is important to have a variety of maps on hand; where one shows impassible mountains, another might show a lowland path.

Why You Are Sick

Today, more than ever, we live in a disease-ridden society. But that's not because we lack sanitation, hygiene, abundant foods or opportunities for exercise.

We live in a disease-ridden society because we are creating diseases. Or, more accurately, we are having diseases created for us, and through careful manipulation of our fears, we have come to accept these manufactured diseases as real.

Anyone who watches television or reads a magazine has seen (albeit largely unconsciously) how cleverly marketing first creates a disease, ensures that lots of people come down with it, and then offers a "cure" to get rid of it.

As an example: Until Viagra came along, impotence was either an occasional mishap resulting from emotional causes or secondary to other disorders, such as circulatory problems, nutritional deficiencies, and diseases or trauma interfering with nerve function.

Then Pfizer came along, developed a drug that increases blood flow to the male penis, and needed a market to sell it to. Nevermind that Viagra's ability to improve function is limited to a single mechanism that really only works for a few men (those that are producing insufficient amounts of nitric oxide). That market was too small. What Pfizer needed to do was to create a larger market.

First, they created the need, and that was easy: What man doesn't want to be better in bed? Second, they created the disease, i.e., the reason you're not better in bed. They took the old name -- impotence -- and scotched it, because of its negative connotations. The word "impotence" conjures up images of a skinny-armed teen getting sand kicked in his face by the guy with the rock-hard biceps and bosomy blonde in tow. Or the cuckolded husband coming home from his 9-to-5 only to discover his randy wife in bed with the next door neighbor.

No, those are not images with which any man would associate himself. So Pfizer created a new disease -- Erectile Dysfunction -- with an entirely neutral connotation -- and craftily expanded the boundaries of this  created disease. The really, really important thing to note here is that Pfizer took a symptom of several diseases and made it into a disease by itself so that they could sell a drug to "treat" the disease.

It still hasn't reached the point where a man is going to sit down on the bar stool, look over at his neighbor and say, "Damn, dude, I just got diagnosed with ED. Pass the peanuts, wouldya?"

But the reformation of impotence (the symptom), into ED (the value-neutral disease), mainstreamed the concept to the point where healthy young men are now taking the drug for a perceived extra performance edge.

And Pfizer is putting lots of money in the bank.

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Another excellent example of a manufactured disease is osteopenia.

There was a time when osteopenia was an incidental finding on an x-ray, a way you would describe a bone which had gotten more transparent than others. It was an indicator of the loss of mineral in that bone, and a sign that, as a doctor, you might want to be on the lookout for osteoporosis further on down the line.

Or maybe not. Plenty of people experience temporary osteopenia, which reverses on its own. A number of pharmaceuticals cause osteopenia as a side effect, and as soon as the drug is no longer taken, normal bone is restored.  People living sedentary lifestyles, either due to other health problems or simple neglect,  often develop osteopenia which disappears with a return to activity.

But for several years, I had many a middle-aged woman come to my office with the "diagnosis" of osteopenia, for which they had been prescribed Fosamax or one of the other bisphosphonates.

Again, here we have a symptom, or exam finding, that has been carefully recrafted into a disease.

The rebranding of osteopenia came with the development by Merck of a new drug that could increase the mineralization of bone. But this new drug -- Fosamax -- like, Viagra, had a very limited audience. People with osteoporosis, a true weakening of the bone.

But in 1997, Merck hooked up with the developer of a cheap and easy x-ray machine which purported to measure bone density in a way that would predict risk of fracture.  The DEXA scan immediately multiplied Merck's market by creating a new class of disease sufferers, this time people who had the new disease of "osteopenia."

And the market took off. With the addition of standards manufactured by the drug companies themselves, medical doctors started prescribing Fosamax to a huge number of middle-aged women.

The wheels have since come off that cart, at least a little bit. No so much because subsequent research shows that Fosamax does not create healthier bone, nor because Fosamax has also been shown to actually cause bone death and increase fracture risk in certain bones (true). Nor has the fad decreased because research has also shown that the DEXA scan does not adequately -- or even remotely -- predict bone fracture (true).

No, the fad has passed because the patent on Fosamax ended in 2008, and the horde of no-name drugs has reduced the value of Fosamax considerably. With competition, Fosamax is no longer the money maker that it once was.

But the lesson that Merck learned was a valuable one. No, not the lesson about the consequences of releasing a dangerous and poorly-tested drug onto the market.

The real lesson here was that coupling tests which purport to objectively demonstrate the presence of a "disease" with a drug that cures that "disease" is an extremely potent form of marketing.

Today, consultants of pharmaceutical companies are offering week-long seminars on how to couple drug development with tests that will increase the demand for that drug, and then market them to medical doctors and consumers alike.

This development has gone largely unnoticed, and unreported, and the vast (and unwarranted) trust that Americans have in their medical physicians makes such sales easy to make.

Medical doctors, on their side, are seeing pharmaceutical company payouts, in the form of "consulting fees," as a lucrative sideline to offset the continuing pressure on their income. Medical doctors are also paid ludicrous sums for enrolling patients into research programs, to the extent that some practices have hired specialists to sift through the studies available and determine which will be the most profitable to participate in.

And patients, on their side, are manipulated by the fear spread by pharmaceutical companies that previously unheard-of diseases will dramatically affect their quality of life.

But you know what? Most people aren't sick, and most people don't need prescription drugs -- although 50% of the U.S. population are taking them.

In fact, most of the people taking drugs today are not the victims of disease, they are victims of a lucrative marketing scam no more ethical than an email from a banker in Kenya.

Dr. Avery Jenkins is a chiropractic physician specializing in the treatment of people with chronic disorders. He can be reached at alj@docaltmed.com or by calling 860-567-5727.