The above famous quote,  “Absence of evidence is not the evidence of absence!” , is most oftenCarlSagan_JPL attributed to Carl Sagan.  Simply put, it means that if we don’t know that something exists, it doesn’t mean that it doesn’t exist.  It is a philosophy that is at the heart of our struggle to gain recognition of what we already know as a community to be true.

I have always been a very intellectual person who, like the folks from Missouri, needed to be shown the evidence.  I was a poster child for “evidence based” thinking.   So when medical test after medical test and doctor after doctor was unable to reveal a definitive diagnosis, I had do what was originally unimaginable; diagnose myself.  Like an amateur sleuth, each lead that I followed always ended up in the same conclusion; I was experiencing a syndrome of symptoms related to an adverse event from a fluoroquinolone (FQ) antibiotic. This adverse event was not only happening to me but it was happening to thousands of other individuals as well. This was a conclusion that I was having a hard time accepting. After all, my doctor, who clearly had more medical training than I, told me that fluoroquinolones are “safe and well tolerated.”  I had placed faith in a system that I was sure would not fail me.

It was not until most of my doctors started denying my claims of an FQ reaction that my faith in the medical system became very disillusioned. That faith was more of an intellectual confidence in an evidence based system then it was just pure blind acceptance.  What I did not realize, at the time, was that the medical system that I placed great faith in was, in part, an illusion: An illusion that was something akin to the movie “The Matrix” where the perceived world was not the actual world.  I did not like this new “real world” that I was experiencing.  For the first time in my life I felt discrimination, alienation, and dismissal.

How could this nightmarish scenario happen to me, and others, in our modern world?  For a long time I blamed myself for not catching this situation ahead of time and psychologically I still wrestle with the “why me” questions.  I knew that the medical system was not perfect and it made mistakes from time to time. After all, making mistakes is part of the learning process. Theoretically, the art of medicine is supposed to be a never ending science into unknown depths and challenges. Treatment theories are practiced over and over again until they become competent, but they are never actually perfected. Perfection cannot be reached because of the infinite amount of unknown variables that exist. The amount of unknown variables that exist within each person is staggering. So if perfection is never reached why does the medical establishment refuse to recognize our plight?  I suppose the answer to that question is more frightening to them than it is to us.  For if they were to readily admit that our plight is legitimate then they would be culpable in the damage done to society. Instead they engage in what is known as plausible deniability.  A condition in which the doctor can safely and believably deny knowledge of any particular truth that may exist because the subject is deliberately made unaware of said truth so as to benefit or shield the subject from any responsibility associated through the knowledge of such truth.  Because of this, you will hardly ever see a doctor put anything in writing.

We are getting mixed signals in the world today regarding our medical care.  On the one hand we have medical groups and doctors telling us to be proactive and advocate about our own health, educate ourselves about our unique health conditions, and become informed about treatments.  But these claims of self-empowerment are more often than not contradicted by the behavior of health care providers.  In reality, informed, assertive, and confident patients are often penalized for doing what they’ve been told to do.

Recently a member of the fluoroquinolone community related this story to me.  In preparation for a doctor’s appointment the FQ sufferer decided to bring in some documentation to bolster their viewpoint. Knowing that bringing in too many articles documenting proof of their symptoms was not a good idea because it could overwhelm the doctor within the limits of a harried appointment.  So they opted for clear concise examples to back up the reasonable hypothesis of their symptoms.  Well, like so many other stories we have heard before, the doctor implicitly denied their claims even though he could not give him a clear cut diagnosis. If that was not enough, to add insult to injury, the doctor even noted in their file that the patient had a “self-reinforcing delusion regarding fluoroquinolones and even brings in documents in an attempt to prove it.”  You are damned if you do, and damned if you don’t.

As frustrating as all this seems, I want FQ sufferers to know that we are not alone. Recent studies have shown that in more than fifty percent of the complaints that patients bring to the doctor do not have any diagnosable medical cause that can be revealed by laboratory testing.  Recently I wrote about patients that were aware of chemo brain but could not convince the medical community of its validity. The symptoms of chemo brain were attributed to other health conditions. Only recently, after years of attempting to convince the medical community, have studies been done that proves its existence.

Every day numerous individuals enter our ranks as they become statistics; unsuspecting victims in a war that is raging just off of society’s radar scope.  Because of this we must never give up our fight for recognition.  We must fight not only for ourselves, but for our families and for strangers that we have never met. The famous line from the movie Independence Day must be lifted as our battle cry, “We will not go quietly into the night!” We will not vanish without a fight! We’re going to live on! We’re going to survive!