Dr. Smith referred me to a rheumatologist because she thinks it likely that I have a systemic disease and probably an autoimmune one. I arrive at the clinic about half an hour before my appointment. I had a long drive and didn’t want to be late so I left home early to allow ample time for the drive in case traffic hindered me. The waiting room is very small with fewer than twenty chairs. I check in and have a seat. I brought my iPod (as is my custom) and I try to listen to a podcast but I’m have trouble concentrating.

I don’t know much about autoimmune diseases. I know they are caused by the body’s immune system attacking cells which it shouldn’t attack. I think of it as a coup with the immune cells trying to overthrow the established organ regime. I know that rheumatoid arthritis and lupus are autoimmune diseases and that diabetes sometimes is. I don’t know much else but then I remember that I’ve also heard of sarcoidosis although my knowledge is no more than minimal.

Knowing so little about specific autoimmune diseases is good. When one doesn’t feel well and is searching for the cause, it’s too easy to see one’s symptoms in diseases. One reads about a disease and compares one’s mental notes with the symptom list. At first it’s okay: Yes, I have this one; no, not that one. But often one can fall into the trap of expanding one’s symptoms to fit the disease. (“Maybe I have that a little even though I hadn’t thought of it.”) Hypochondriasis is not required for symptom expansion: diagnosis desperation can bring it about. My health has declined significantly for more than two years, and I’m desperate to put a name to it so that I can get treatment. Not knowing about the autoimmune diseases is good as it keeps my thoughts in check and prevents me from self-diagnosing.

I am absorbed in my thoughts and it doesn’t seem long before my name is called and I’m conducted to the exam room. There’s a quick check of my vital signs and then I’m left to wait for the physician. Time to try to attempt to concentrate on the podcast again. I am unsuccessful.

There’s a quick knock on the door and Dr. Bailey enters and introduces himself. He sits at the small desk. He is tall and broad shouldered; he looks almost comical at the too-small desk. He pulls a sheaf of rolled papers from the side pocket of his coat. He looks at them and then tells me that he wants to go over some things which are in the notes from my previous physician visits. With a pen in his hand poised to emend the papers, he starts asking me questions. He asks how long I’ve been ill and what my first symptom was. He asks what other symptoms I’ve had, and like Dr. Smith, he requests that I tell him everything no matter how minor or irrelevant it may seem to me. He makes frequent notes and asks many questions. He then moves to my family history asking all manner of questions about my relatives and their health or cause of death. Not surprisingly he is primarily interested in parents and siblings.

As Dr. Bailey works I notice that my records which he brought with him have been marked with a highlighter and have notes in the margins in blue ink — the pen he is using in the exam room is black ink. It is obvious this man has done his homework and is serious about determining the reason behind my problems. It is also clear that he is listening to me. I have had two physicians in a row (Dr. Smith and Dr. Bailey) who are taking my health problem seriously and are applying their knowledge and time in an attempt to find an answer.

After completing the history he does a physical exam. He listens to my lungs and tells me that he can definitely hear the rales or crackles indicative of pulmonary fibrosis. He spends a great deal of time examining my nail beds and apparently does not find what he expected. The rest of the physical exam seems almost cursory.

He returns to the desk chair and turns to me. “Rheumatologists primarily treat autoimmune diseases,” he starts. “Some autoimmune diseases cause pulmonary fibrosis and generally we can treat them somewhat effectively. When a pulmonologist uncovers fibrosis, the pulmonolgist hopes that it is autoimmune based because a treatment is probably be available and the patient’s symptoms can be controlled. However, most fibrosis is not autoimmune caused, and when it isn’t, it’s unlikely that it can be treated. Pulmonologists send us a patient because they hope that the disease is one we can treat. Unfortunately, I don’t think you have an autoimmune disease. Clearly you are very ill and have been for some time. I wish I had an answer for you as I know that there is some relief in getting a diagnosis. I will order some additional tests because there are a few things which I can’t entirely rule out. If the tests are negative then my nurse will call you with the results. If any of them are positive then my nurse will call you to make another appointment. I wish you good luck in learning the cause of your illness. Dr. Smith will have my report when you see her again. If she can’t give you an answer, then keep looking. You may have to see other specialists before learning the cause. I’m sorry that I can’t tell you anything more definite.”

I thank Dr. Bailey. I glance at my watch and see that he has spent at least 45 minutes with me. It’s very unusual for a physician to spend that much time examining and talking with me. As a matter of fact, it may be the first time. As he starts to go out the door, I say, “Dr. Bailey.” He turns and I continue, “I want to thank your for spending so much time with me, learning about my problems, and trying to determine the cause. I know you’re busy, and I really appreciate the time you’ve spent with me and the work you’ve done.” He looks at me almost quizzically, and then smiles and goes out. I suspect he is not used to being thanked by a first-time patient for whom he does not have good news. But I really am thankful for his dedication and consideration. He asked questions, he listened, and he sought answers. What more could one want? Other than a diagnosis, that is.