Doubt

How does one respond when receiving an incredulous look from medical personnel, a pharmacist, social security representative, or just people I meet through out the trials and tribulations of my daily life?

In two and a half years of illness I dealt with several health issues concurrently. Each with its own course of treatment and each with its own debilitating affect on my daily life. The one thread that connects each of these issues is that for the most part the illness has been detected but no one can understand why I have what I have. There is theory but no fact. For diagnosis I fall to the extreme side of people who have the illness for no apparent reason which makes treatment that much more difficult.

My social anxiety and panic disorder actually preceded the rest of my health issues by a few years. Despite treatment, medication and therapy it is far from being under control. In my case the presentation of symptoms was later in life than with most cases. Despite my and my doctors best efforts we have yet to determine the initial events that triggered the onset of symptoms. No events that should have led to the development of post-traumatic stress. No great tragedies that have haunted me for years. In short I have all the symptoms but can point to no event that justifies the severity of my illness.

Next on my illness menu is renal papillary necrosis. Which in layman’s terms means that my left kidney is dying one cell at a time for again no apparent reason. In 2002 I developed severe kidney pain, which I assumed was a kidney stone. After a visit to the ER failed to turn up any blockage I was referred to an urologist. He scoped my kidney and determined that my left kidney was in the beginning stages of necrosis. Symptoms, which mimic those of stones because the dying tissue sloughs off the kidney and can cause similar pain. Primary cause of necrosis diabetes, however even diabetics rarely develop the illness now days because of improved care from modern urology. My urologist has not seen a new case beside mine in near five years. We have yet to determine why I developed this illness.

In April 2003 I developed bronchitis, which I have had on several occasions through out my life. Treatment always took care of the problem. Not this time. I have been to the allergist and no allergies were detected. I was checked for various digestive diseases that can affect the lungs. None detected. Regular appointments and testing from the pulmonologist have only served to show my bronchial tubes are irritated and inflamed with no obvious reason for its staying power. Tissue samples have shown no serious illness. Mucus samples have shown low level bacteria but nothing that should be affecting my bronchial tubes and breathing to such a degree. The other issue with bronchitis is that the primary long-term treatment is steroids, which do not play well with anxiety. In my case they are not even on speaking terms, which makes treatment much more difficult.

And finally on the hit parade is the most recent cause of my discomfort diverticulitis. Still in the testing stage but I have been told by more than one doctor that from at least the initial exams they are not sure why someone in their mid forties has developed an illness that usually hits people nearer to sixty.
Bottom line is that I have several illnesses that I am dealing with on a regular basis. No big deal really and I do not bring all this up for the sake of hearing myself whine. Primarily I am discussing this because of the reactions I have begun to receive on several fronts.

What started me thinking was seeing the gastro-intestinal doctor this past week. While examining me he was considering another round of antibiotics and asked about my insurance. I told him that at the moment I have no insurance that covers meds because I have just switched over to Medicare. He gave me a look and than asked what is a guy in his mid forties doing on Medicare. We had just gone over my history and he knew about the debilitation caused by the various illnesses but obviously he had some doubts. He than went off on a tangent about my age and why did I believe I have these various illnesses.

This was not the first time nor I am sure it will be the last time I deal with the doubt of others. Hell, some mornings I wake up look in the mirror and doubt myself whether the illnesses exist or whether it is all psychosomatic. I have been assured by my primary doctor, my psychologist and psychiatrist that my illnesses are not in my head but exist in the real world.

It is hard though. Sometimes I find myself wanting to lie when I talk to people and they ask the usual questions what are you doing with yourself. Well I am no longer working due to a virtual smorgasbord of illnesses. They give me a look and say something like you look great for someone who has been sick for over two years.

No I may not be the most ill person on the planet or even on my block. That does not reduce the effect the illnesses have had on my life. No more softball. No more bike riding. Swimming is a pain because the chlorine affects my lungs. BBQ’s are not the same because I can no longer handle being in front of the grill and I enjoy the grilling even more than the eating. Working now that’s a big one. It is difficult to work when you cannot breath well. Have panic attacks hiding under your desk waiting to surprise you and can not be sure when your kidney might decide that today is as good a day as any to give up the ghost.

So for you doubters out there, you know who you are. Whether you are supposedly family, friend, acquaintance, doctor or stranger. Until you have walked a day in my shoes please have the courtesy not to doubt my illnesses. It is either that or stay out of my life. I have enough stress dealing with my doubts, angst and anxiety I do not need your crap to.

Thank you and have a nice day.