Much to our dismay, when we are faced with a chronic illness or worse yet multiple chronic illnesses, we often find a world of uncertainty. To our surprise, physicians are not the all-knowing omnipotent beings they were purported to be a few years ago. As diseases progress it sometimes seems more common to wind up with a diagnosis of exclusion rather than a diagnosis based upon a factual evaluation.
While there are frequently standards for diagnosing an illness or disease process, they are most often strictly defined by the insurance or regulatory agencies. Some diseases may not present identically across a population. It is my opinion that while guidelines for diagnosis are understandably necessary, we have systematically removed the ability of our physician providers to draw their own conclusions based upon symptomology and assessment.
This regulation in the field of diagnosis is necessary to protect us and guide our physicians from making false or unsubstantiated diagnoses. However, by requiring such stringent diagnostic criteria we have removed their ability to individually evaluate and treat us. It has become more common for a physician to tell us that while they think we may have a particular diagnosis, they are unable to conclusively make the diagnosis. This is because we may not meet the stringent criteria set forth by some regulatory commission or agency.
Over the last year to year and a half, I have been told I have a very serious neurological condition, that is likely progressive. I’ve been told this by numerous physicians. At least one specialist was absolutely unequivocal of this diagnosis. I was referred to a very large teaching hospital who specializes in this disease. After a few months, it was time for my appointment. After traveling over an hour to get to the appointment, I thought I was finally going to get the answers and treatments I was repeatedly told I needed.
Much to my dismay, I was very, very wrong! The outcome was that while it could, in fact, be that suspected illness, this specialist was hesitant to make the final determination. While there are concurrent factors that could influence the diagnosis, there were not any that would preclude the diagnosis. Or so I had been told previously. After an interview with a Nurse Practitioner, she went to consult with the physician.
When he came in the exam room, he was extremely pleasant but proceeded to crush my world. He proceeded to explain that while the symptoms and diagnostic studies could be attributed to said neurological illness, that he was unable to make the diagnosis at that time. He went on to explain, that essentially, we had to wait six to twelve months, then re-evaluate the diagnostic studies to see if things had gotten worse consistent with the suspected diagnosis. At that time, if things had progressed to a severity required to make the diagnosis, we could begin treating it with medication. I was so flabbergasted I could barely speak.
Please do not misunderstand me. I do not want this diagnosis. But I had been told for nearly a year that it had to be what is wrong with me. That was after well over a year of uncertainty. Multiple physicians, some specialists, had told me I had this disease. Yet none were willing to make the official diagnosis in order for me to start the medication which has been proven to slow the progression in some patients. I was crushed because the medication has been studied to be most effective in the first two years after onset. I am already past the two-year mark. If I wait another six to twelve months, I will most certainly be further behind the eight ball than I was. What does that mean to my prognosis?
Because I did not meet the “gold-standard” of required items to solidify the diagnosis, he would not make the diagnosis. Gave me a bunch of things that must be ruled out over time. Things that other physicians had already told me were ruled out. While the gold standard is a guideline, not a hard and fast rule of diagnostic criteria, I was informed that there is no room for judgment in the clinical criteria. Isn’t judgment the definition of a doctor’s evaluation of your situation? It is the physicians’ judgment as to what is wrong with you. It is their judgment as to how to best treat your illness.
So I left the appointment with even more uncertainty than when I arrived, and near hopeless in terms of finding a diagnosis and achieving effective treatment. So now I get to sit and wait in limbo. Without a clue when and if I will get an official diagnosis and treatment. Unsure of whether that treatment will even be effective. Uncertain of a medical profession that has determined I must get much worse before finally making the diagnosis so many have told me they feel is the culprit.
One long, slow, uncertain day at a time. I’m not necessarily hopeful that I will get better, but I am absolutely hopeful that I will not continue to get worse. Sadly by not getting worse, I will ensure that they will not be able to make a diagnosis, which effectively means I will eventually get worse as the culprit will be left untreated.
Have you encountered uncertainty in your care? How do you handle uncertainty? What is your story of uncertainty? Please share with us in the comments below. We would love to hear your story!