chronic disease

Shattering the Mirror: Becoming More Than the Reflection of a Disease

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While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me?  I suppose not. But who really needs a Freudian slip to guess that one?  Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This post was originally published in November of 2013. 

What If We Are Wrong? Medication, Medical Science and Infallibility

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What if we are wrong? Such a simple question, but one that seems all but absent in modern medicine. Patients, particularly women, routinely present with chronic, treatment refractory, undiagnosed or misdiagnosed conditions. More often than not, the persistence of the symptoms is disregarded as being somehow caused by the patient herself. If the tests come back negative and the symptoms persist, then it is not the tests that are insensitive or incorrect but the patient. If the medication prescribed does not work or elicits ill-understood side effects, then somehow the patient is at fault. If the patient stops taking the medication because of said side-effects, then they are labeled non-compliant and difficult. The patient is always at fault. It is never the test, the disease model, or the treatment.

What if we are wrong? What if the tests to diagnose a particular condition are based on incorrect or incomplete disease models? What if a medication universally prescribed for a given condition doesn’t work or creates adverse reactions in certain populations of people? What if the side-effects listed are incomplete? Is it so difficult to admit that gold standards evolve or that medical science is fluid? Certainly, if a patient is presenting with a constellation of symptoms that create suffering and those symptoms do not remit with a given medication or medications and/or do not appear on the available diagnostic tests, why is it so difficult to consider that either the medication doesn’t work, the diagnostic was insufficient, or the diagnosis itself was incorrect? Why is it that we assume it must be a mental health issue or somehow the patient is causing the symptoms herself?

Here, one doctor tells how he learned that he was wrong about diabetes and metabolic disorder. He gleaned this not from a book or from his training and not from listening to his patients, but when he, a previously healthy young man, developed a metabolic syndrome that led to obesity and type 2 diabetes. It was by his own personal crisis that he began to question the model of diabetes and its relationship with obesity. Dr. Peter Attia asks:

What if we are wrong?

What if we are wrong, indeed. There are so many areas of medicine where we may be wrong; where we are likely wrong, but where no one is asking the question.

We congratulate Dr. Attia for his discovery, but why does it take a personal crisis for a physician to question the status quo? Why is there such fealty to particular disease classifications or disease models even when there is evidence to the contrary? Is it the nature of modern medicine to lay down guidelines and be done or is it simply human nature to resist the notion that we can be wrong? Maybe a combination of both; I don’t know the answer, but I do know that if one is certain of everything there can be no room for learning or discovery.

On the other hand, if we begin with the notion that humans, and thus, the structures humans create are fallible – that we do not know or understand everything – and if we add to that humility a dose empathy, perhaps then we can begin healing patients rather than managing them.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

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This post was published originally on Hormones Matter in July 2013.

A Question of Responsibility in Health and Disease

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Self-responsibility is much needed in the quixotic culture that surrounds us today. It should begin to be acquired even in infancy as we learn to navigate life. The difficult job of parenthood, perhaps the most important one of all, has to be undertaken without previous experience or training. In former years the wisdom of grandparents was sought avidly when families tended to remain in the same locality. Geographic separation has caused them to be largely discarded.

This post states that there is no more important example of self-responsibility than in maintenance of health. When we are struck down by disease, we have been taught that it is purely an act of nature: that it has nothing to do with our own actions. It is regarded as bad luck or an inevitable effect of genetic predisposition. We have also been taught that when we get sick, whatever the cause may be, that the wonders of modern medicine will take care of it. We accept a prescription as a birthright, often without seeking why it is being prescribed or how it is expected to cure us. Is that really how we want to live?

Self-Responsibility is Critical to Health

When I emphasize dietary indiscretion as the harbinger of ill health, some readers will say, “oh yes, we’ve heard all that stuff before. It is so boring”, not even bothering to read further. So let us use an analogy that I have used before in posts on this website. You have bought a car and the owner’s manual tells you that the engine uses regular gas. However, a friend has told you that high octane gas increases acceleration and makes the car livelier. You have decided that the feel of the car with high octane gas appeals to you, even though you have also been told that it increases the wear-and-tear on the engine, possibly leading to an eventual breakdown. With that knowledge, you are faced with a choice. If your decision is to continue using a fuel for which the engine has not been designed, it might be referred to as indiscretion, or even lack of self-responsibility. When the forecast of breakdown becomes a reality you might even blame the car maker. Cursing the necessary expenditure, you might expect a skilled mechanic to repair the damage, even forgetting that it may have been your own fault. Could this be compared with dietary indiscretion? Of course, you need to have the knowledge of how and why the “wrong choices” do, in fact, result in health breakdown. If you persist in making those “wrong choices”, are you in fact exercising self-responsibility towards your own health?

Natural Sugars versus Sugary Sweets

However we arrived on the face of the earth, we could not have survived if the fuel had not been available to us. Anthropologists tell us that our ancestors were “hunter gatherers”. The food (fuel) was provided by Mother Nature in the form of nuts, seeds, roots, leaves and fruits. In particular, there was no such thing as sugar in a free state. It was locked up in the fruit and leaves. There are at least 40 or more nutrients in natural food that are mandatory to the maintenance of health and many may not even have been discovered yet. None of them are contained in the highly processed, heavily sweetened substances we call food.

Where did we go wrong? Believe it or not, sugar is the villain. We can now go on the Internet and are told repeatedly that it is more addictive than cocaine and yet 80% of the artificial foods on the shelves of a groceries store contain sugar. In fact, these “foods” would not sell unless they were sweet to the taste. People are so bored with hearing this that it is virtually ignored. Because the characteristic symptoms develop slowly and do not produce abnormal conventional laboratory studies, the connection is almost invariably lost. When symptoms do emerge, they are often mistakenly diagnosed as psychosomatic, for which the standard treatment is a prescription for one of the many tranquilizer pills. Self-indulgence as the cause is never considered by patient or physician.

Of Different Fuels

Let’s try to keep it simple by turning once again to analogy. Gasoline in a car engine has to be ignited. The explosion that occurs represents a union of gasoline with oxygen. The resultant energy has to be captured in a cylinder in order to drive a piston. This connects with a flywheel that transmits the energy to the wheels through a transmission. Our bodies have exactly the same problems but the mechanisms are widely different. Glucose, derived from simple sugars, is the primary fuel of our cells, particularly in the brain. It is “ignited” by uniting it with oxygen and this is done by means of an enzyme. In order to function properly, this enzyme requires the presence of vitamin B1 (thiamine) and magnesium. You could say that thiamine and magnesium “ignite the glucose”, releasing energy in the form of electrons. The energy from electrons synthesizes a kind of energy currency known as ATP. This works a little like a battery. Chemical energy derived from “burning” (oxidizing) glucose must be transduced to electric energy for physical or mental function. If those nutrients are not present, the sugars remain unprocessed, free to evoke the host of modern disease processes that fall under the rubric of Type 2 diabetes.

Returning to our engine analogy, many car owners will remember that they had to use a mechanism called a choke when starting the cold engine. This resulted in a temporary high concentration of gas. Perhaps it will be remembered that if and when the choke was not released or discontinued when the engine had warmed up, the engine would run distinctly badly and black smoke would emerge from the exhaust pipe. The black smoke represents inefficient combustion of the gasoline. Therefore, there should be a much lower ratio of gasoline to oxygen when the engine has warmed.

Cellular Engines Need Fuel

Each of all our cells have “engines” called mitochondria that generate energy. They work constantly, do not have to be started like a car engine and are always warm. They do not need a choke. When we take an excess of calories that do not contain the necessary vitamins and minerals, it is exactly like choking our mitochondria, creating inefficiency of energy production. This is particularly true of sugar that overwhelms the ability of vitamin B1 to “ignite” it. Inefficient combustion (oxidation) gives rise to organic acids that are the equivalent of black smoke in the car exhaust and they can be found in the urine. This inefficiency of energy production affects the part of the brain that is responsible for our ability to adjust ourselves (adapt) to the changes that occur in our environment. We develop functional changes such as “brain fog”, palpitations of the heart, unusual or excessive sweating and “goosebumps” may appear on the skin. We may have a drop in blood pressure, associated with a fainting attack. Because the standard laboratory tests are normal, it is concluded that the symptoms are psychosomatic.

I remember the case of an adolescent whose diet contained a lot of “junk foods”. He climbed a rope in the gymnasium, entailing the consumption of energy. When he came down he passed out and was removed to the nearest hospital. Without knowing that he had vitamin B1 deficiency, they gave him intravenous fluids containing glucose. He had eleven bloodstained bowel movements and died. Giving sugar to somebody who is deficient in vitamin B1 is extremely dangerous and the trouble is that ingestion of sugar leads to vitamin B1 deficiency. There is considerable evidence that dietary indiscretion of this nature, continued over years, may eventually give rise to a brain disease that is given a name. Alzheimer’s, senile dementia, Parkinson’s disease and other well-known scourges may well be the legacy in your later years.

What We Eat and Drink Matters

In light of this discussion, who is responsible for the current health crisis? While it is tempting to blame others, and certainly the food and pharmaceutical industries benefit greatly from our incessant need to indulge, the blame ultimately must reside with each of us. We have abdicated our responsibility to manage our own health. Like the car owner who ‘likes the feel’ he gets from his car with high octane gas, we like the feel we get from when we eat sweets and other junk foods. Ultimately though, without the correct fuel, engines clog and sputter. Whether those engines reside in our vehicles or in our bodies, absent the correct fuel, damage accrues. It is a relatively simple equation, but one that requires a modicum of self-awareness and responsibility. Unfortunately, I am afraid self-responsibility seems to have disappeared from modern concepts of health and disease. I suspect that until it is found and embraced again as core human value, diseases of consumption and indulgence will continue to flourish.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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