on day 0 of medicine x, i, along with other epatients, attended and participated in a special event called “partnering for health” sponsored by eli lilly and company.
the day revolved around clinical trials. hearing from the patients who may take part in said trials was the goal of the day.
eli lilly wanted us to understand the challenges in creating and recruiting for a clinical trial before we offered much feedback/reflection. they prompted us to design a trial for fresh-on-the-market medx cola. it was a fun and engaging exercise and i may write more about that later. this post is dedicated to something else.
after our lunch break, we reconvened and began hearing about a case study. the point of the talk by eli lilly was to demonstrate a need for patient engagement in the enrollment process of their clinical trials.
however, the topic changed when scott strange, awesome diabetes and mental health advocate, raised his hand and spoke the words, “your presentation was good until i stopped listening.”
i shared this on twitter about five minutes prior to scott’s comment:
many of us in the room had gotten lost in the science presented in the powerpoint. it got too technical. the bigger picture got swept over and translation error turned the tune of the dialogue.
we started talking about the idea that maybe recruitment at its peak because patients or (i really don’t like this term but i’ll use it for the lack of a better one) lay people do not understand the medical jargon used to rope us in.
i’m certainly in that boat. i give up easily on trying to ‘get it’. i skip over big words.
we had a dynamic and constructively productive conversation after that about how we could work together to make the language of clinical trials more accessible to the patients interested in them:
many of us were surprised that eli lilly was so accepting of our comments:
overall it was a wonderful day.
and just for funnzies, i wanted to share with you an essay i wrote four years ago, which seems like a life time ago if you are only 24 (which i am). i just copied and pasted it from my assignment folder in word.
it is funny to see that some of these ideas have been up in the ol’ noggin for quite a while. funny how it felt like the first time i’d thought them while at medicine x.
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March 15, 2010
The Illusion of Disease
The word “disease” connotatively implies a certain level of discomfort; to be dis-eased is to be ill-at-ease, to be distressed, to feel troubled. Putting language aside, one must question what the actual term signifies. On a more concrete level, disease is a thing, a pattern one can observe at the microscopic level, a genetic defect, a condition that harms the health of bodily organs. At this level, disease is not something one can choose to be at ease with, but rather a malfunctioning part of the body. But more conceptually, more abstractly, one must recognize the socio-cultural nature of disease the concept. There is a philosophy to disease in western societies where the average person has access to a multitude of medications and therapies. The United States exemplifies a country where disease the concept has harsher and more damaging consequences than disease the thing. This essay will explore disease philosophically by examining the general view, treatment, and practice of disease in the United States.
Scholars who have contemplated this issue tend to fall into one of two philosophical groups: Objectivist or Constructivist. Their debate rallies around the possibility that disease could be a product of culture. The Stanford Encyclopedia of Philosophy offers the following clarification,
“Some scholars, objectivists about disease, think that there are facts about the human body on which the notion of disease is founded, and that those with a clear grasp of those facts would have no trouble drawing lines, even in the challenging cases. Their opponents, constructivists about disease, maintain that this is an illusion, that the disputed cases reveal how the values of different social groups conflict, rather than exposing any ignorance of facts, and that agreement is sometimes even produced because of universal acceptance of a system of values.”
Disease to a small extent is objective. One must accept that bodily processes do have the ability to malfunction. However, one must question: who are “those with a clear grasp” of medical fact? Could it be that they represent doctors, surgeons and nurses employed in the medical profession? According to the New York Times, only .2% of the population are practicing physicians. If this is the case, one must wonder how “clear” is the “grasp” of the modern typical, non-medically educated patient-consumer? It is clear that the number of Americans taken by the illusion of disease is pretty high.
Constructivists believe that disease is created and maintained by social structures; the seemingly objective analysis of bodily malfunctions is actually subjective because the measures of disease are all relative. A society formulates a norm, and then uses deviation from that norm as a basis for diagnosis. Therefore, diseases are not actually malfunctions of bodily processes but rather, an anomaly from a generally accepted notion of what should be. The objective reality, no matter who is looking through the microscope, is lost in the translation. When members of the American society fail to recognize the cultural impacts on their notion of disease, they easily slip into an ignorant belief that disease is always concrete.
It so easy, so natural to fear the unknown, fear what one cannot observe outright. Death is highly feared in the American culture because, by nature, the qualities of such an experience remain a mystery. In turn, because disease often leads to death, it is both mystified and feared as well. When fear overtakes modern patient consumers, it is difficult for them to distinguish between the actual thing (the microorganism or the actual germs), and the pent-up, over-fed fear of the concept. This is the illusion of disease. The confusion of feeling sick leads the individual to anxiously search for a method to become well again. In this modern age, the Internet has equipped everyone with a limitless supply of knowledge on every subject imaginable- especially in the realm of health.
Countless websites, such as thehypocondriac.com and healthline.com, offer search boxes where anyone can type their symptoms and view possible reasons for their discomfort. They will become frightened into thinking they have some serious, yet highly unlikely ailment.. And from that point, the placebo effect kicks in. A person feels how they think they should feel and once they have received the treatment they think they need, they feel better. This circular system leads people to believe they have non-existing illnesses; it is a system which breeds hypochondriacs. A person can only find the cause for a symptom when he or she has something else to relate it to. And when that person knows certain ailments exist, they look for it in themselves. These websites provide the masses with a tool to create and harness illness within themselves. This, however, doesn’t occur because Americans are stupid, but rather because the average person does not know how to interpret results written in a language they cannot understand, which in turn causes them to worry unnecessarily..
Because the language of medicine is nearly incomprehensible to a person not medically trained, that person is more prone to succumb to the illusion of disease. If one cannot interpret the language of disease, one cannot begin to understand what it really is. Mike Adams, a holistic nutritionist and author of over 1,500 books on the topic of disease prevention wrote an article about the illusion of disease in which he addressed the issue of language. Adams writes,
“Type 2 diabetes isn’t technically a disease. It’s just a natural metabolic side effect of consuming refined carbohydrates and added sugars in large quantities without engaging in regular physical exercise.
The name “diabetes” is meaningless to the average person. It should be called Excessive Sugar Disease. If it were called Excessive Sugar Disease, the solution to it would be rather apparent.”
Adams is suggesting here that if the names of common diseases were written in terms that an average person could understand, disease would not be as feared. Patients could then be able to understand ailments more clearly, and then disease may appear less threatening. Correcting the American culture’s view of disease could be as simple as renaming diseases to make them more understandable. However, renaming would take a very long time, as there are a lot of diseases known today. Another method of improving the general American understanding of disease is to change the structure of treatment within the healthcare system.
According to CBS News, the national average wait time in an emergency room is one hour. In some states, such as Utah and New Mexico the average wait time can be even longer – as much as four to five hours! “Wait time” here indicates time before a patient gets to see a physician. During this wait time a patient is asked to provide all medical insurance cards and general information. If a person does not provide this information, they will not see a doctor at all, which makes one wonder the incentives hospitals have to treat patients. Are the bureaucratic hospitals of capitalist America really interested in helping patients get well, or do their interests lie in profits? It is certainly true that if everyone was healthy, then a hospital wouldn’t make any money. In a capitalist system – where profit is of utmost importance – disease becomes a foundation upon which one can build a profitable structure. If a company can manipulate consumers into thinking they are sick, then that company can build a greater profit. As long as people think they are ill, they will purchase medications.
Once a concept is formed it can be utilized and manipulated in many different ways. The modern patient-consumer is generally ignorant, and thus understands illness to be only treatable by medication. A concept of disease that stemmed from the European Germ Theory has been twisted and skewed so that it benefits the medical and pharmaceutical companies more than the patients.
Doctors find and diagnose new diseases every year, and as a result of those diagnoses, drug companies are creating, advertising, and selling medications for them. These companies are producing new medicines faster than they can be studied, and often times, their side effects create more problems than solutions. America has created for itself a system that perpetuates disease. Today one can be diagnosed with Restless Leg Syndrome, and find medicine that theoretically targets and represses leg movement so that a person can sleep. Introducing a previously “undiscovered” illness, such as Restless Leg Syndrome to the American society, is not intended to benefit those who have leg pains. It is instead, a strategy made up by the pharmaceutical and marketing companies to sell more products. Had a commercial advertising the disease never been created, leg pain wouldn’t be a disease, it would just be, well, a leg pain. American companies have developed this trick to magnify the potential risks of disease for their own profit.
While disease is a concept, no sane person can deny that disease the thing does exist. One with diabetes cannot say that the malfunctioning part of their pancreas is a factor of thought. Nor can one with cancer say, “Since I do not believe in disease, cancer does not exist, therefore I don’t have it.” Such a suggestion would be nonsensical. To be free from disease does not mean immortality; to be free from disease means to live without fear, without the obsession of what might be. Individuals can make a positive change towards a less fearful vision of disease, so long as they have the support of institutions that treat and practice medicine. What would it take, then, for the United States and other western countries to positively influence the general understanding of disease as a concept? The answer is simply a change in motivation. If full attention were directed towards actually helping those who are sick, then the society as a whole would be freer from disease. If money came second, then America could see the illusion of disease for what it is: just a tool for profit.
Adams, Mike. “The Illusion Of Disease.” Jeff Rense Program. 14 Mar. 2003. Web. 18 Mar. 2010. .
“Concepts of Disease and Health.” Stanford Encyclopedia of Philosophy. Metaphysics Research Lab, CSLI, Stanford University, 22 Sept. 2008. Web. 18 Mar. 2010. .
“Study Finds Number of Practicing Physicians Previously Overestimated.” Becker’s Orthopedic & Spine Review. New York Times, 27 Oct. 2009. Web. 18 Mar. 2010. .