The Value of Uncertainty

Here is my premise. We need uncertainty for medical professionals to get our diagnosis right and, even when they have it right, we need them to be uncertain going forward. Without uncertainty, we cannot hope to get the best treatments, the best options, and the best outcomes for RA or any other condition.

Please do not stop reading. Instead, hear me out.

A saleperson who did what we wanted

Have you ever been pre-determined to fit into a category and yet, after extensive trial and error, find that your condition is something else entirely? 

Fifty years ago, I bought an expensive pair of hiking boots that I still have today. When I was measured for the boots, the salesperson insisted that I have size 12 feet. I said I thought that, when wearing multiple socks (three thick pairs all at once), a size 12 would be too small. I did not have the socks with me, so I asked that he not order until I returned in a day or two to get a proper measurement.

The boots did not fit with my socks

He did not wait, and he ordered.  When I went to pick them up, I took my backpacking socks and, sure enough, the boots did not fit.

I lost three weeks of break-in time that early summer, and when I got to the place where I would be backpacking, my boots were not in the best shape. Of course, it did not take long for my boots to be broken in and, after the first week, they were fine. But, I suffered a few blisters along the way. I was a victim of preconceived notions about the size of my boots. Instead of listening to me, the salesman ordered what he wanted and not what I needed.

Doctors who are wrong in all their certainty

How many times have doctors diagnosed us with certainty and missed the point? How about the doctor who decides the symptoms are in our head? They are confident; they have seen it before. But, we know that they are wrong in all their certainty.

The value of uncertainty

Now contrast that with the doctor who is not sure about the diagnosis. They say things like, "Here are a variety of possibilities. Let us look at them, and we will get this figured out." They work hard to narrow a large field of options. They test and probe many possibilities until they have one best condition.

Each patient is a puzzle, and each puzzle deserves to be solved. But even when they get the final answer, guess what? They should continue to test new possibilities. Instead of certainty, we need doctors who are always on the lookout for the solution that will prove them wrong.

We need our doctors to stay curious and engaged

That is the value of uncertainty. We need a medical professional who keeps looking. In fact, they may be our best friend. If we are seen merely as the end of our original diagnosis, our doctors are failing us. We need them to keep looking, keep evaluating, keep wondering, keep trying to maximize our treatment. 

Even if that diagnosis is 20 years old and we seem stable. When the patient says something is wrong, we need our doctors not to chalk it up to a mere complaint and forget about it. Instead, we need that mere complaint to elicit a new line of inquiry. If not on the first mention, at least at the second mention. We deserve their attention. We deserve their help.

My personal experience

I have both ankylosing spondylitis (AS) and rheumatoid arthritis (RA).  It is a combination that is rare. Or, maybe it is a personal form of arthritis that touches both bases. One doctor called my arthritis a stew that is both AS and RA together, and each simultaneously.

My rheumatologist kept at it

My back issues had been around for a few years but started to worsen over time. I asked my doctor about it, and he was rightly skeptical. But the inquiry began when a chiropractor said you have AS. It took five years and two surgeries to get the diagnosis of AS entered into my chart.

Thankfully in those five years, my rheumatologist never gave up on being uncertain about the diagnosis. Instead, he kept at, never shutting the door on the possibility of a second autoimmune inflammatory condition. It was a blessing that he kept at it and, in the end, let a surgeon make the diagnosis of AS.

Uncertainty may create exactness

I may be a stew of arthritis, but my stew contains two big chunks, and I deserve to have both considered when we make treatment decisions. If your arthritis stew is not fully diagnosed or your stew defies diagnosis, I suggest you keep seeking doctors who know the value of uncertainty. In my experience, uncertainty creates exactness and that leads to correct treatment.