When I was nineteen, I began to experience symptoms-a wide variety of symptoms that at first seemed in no way connected to each other. First I had a sore swollen tongue, which at first was only mildly annoying when I ate spicy food, and later progressed to the point where it bled when I ate even vanilla pudding. Then came the dry mouth, which didn’t seem to go away for long no matter how many liters of water I consumed. The joint stiffness and soreness came last.
Over a period of six months I visited doctor after doctor. I visited some doctors about my mouth and others about my soreness and ever-increasing lack of mobility. No one could diagnose me, and many doctors openly suggested that I was a hypochondriac-and my condition continually worsened.
Until finally a general internist ran a blood test on me and diagnosed me with Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease, which is related to Lupus and Crohn’s disease. It is called Rheumatoid Arthritis because its primary symptom is painful joint swelling which results in impaired mobility (and if left untreated, can cause severe crippling and deformity). However, rheumatoid arthritis also has a slew of secondary symptoms consisting of, but not limited to, dry mouth, fatigue, and oral lesions. My doctor informed me that she was not qualified to treat my condition and that I needed to visit a rheumatologist. Rheumatology is a sub-specialty of internal medicine dealing specifically with joint conditions and various autoimmune diseases.
At this point I was relieved. My condition had a name, and I knew which medical specialty was able to treat me. My general internist assured me that effective treatments were available for my condition, so I figured the worst of my troubles are over. I was wrong.
Perhaps the most serious problem I ran into is that there is a severe shortage of rheumatologists in this country. I called the rheumatologist of national renown that I was referred to only to discover that he was completely booked for three months. After calling around, I discovered that every rheumatologist in town had a similar waiting list. (The problem has worsened-now a new patient can expect a six month wait to see a rheumatologist as a new patient.) I made the appointment and also put myself on the cancellation list, and they managed to squeeze me in after only a month. I thought I was very fortunate to get in so quickly-particularly since I was going to see the most highly respected Rheumatology specialist in town.
Over the course of the next few months I would discover that the most renowned physicians are often not very good doctors. Sometimes they are involved in influential research, or maybe they made good grades in medical school. Maybe they have friends in all the right places within the medical community. Many of these doctors have no idea how to deal with patients. Your doctor may be academically brilliant, but if he doesn’t listen to you, he isn’t going to be much help to you. Only you truly understand your symptoms and your individual lifestyle concerns. A good doctor not only has extensive scientific knowledge of your condition and available treatments, but should respect you as a human being and appreciate your right to know what is going on with your health and what types of treatments are recommended.
Dealing with medical illness is an emotionally straining experience, and a good physician should be respectful and considerate of that. I once had a doctor who sarcastically asked me “Is that your professional opinion?” when I was complaining of abnormal pain. Your doctor may be highly intelligent, and he is almost certainly better trained in the health sciences than you are, but only you know exactly how you feel-and sometimes it really doesn’t take an advanced degree to know that something hurts or that there is something very wrong with the function of your body.
To make a long story short, I ended up spending an entire summer in bed, sitting around waiting to see if the medication would take effect. It never did. Not only did my condition worsen, but side effects associated with the medication caused me to suffer dangerous weight loss, and I was forced to seek another rheumatologist. By the time I finally found myself in the care of the doctor who would eventually treat my condition, I was grossly underweight and could barely walk. I am lucky that I did not have any permanent skeletal damage at this point.
The sad truth is, many people put up with bad rheumatologic care because:
A.) It is very hard to get in to a see a rheumatologist, and
B.) Specialists, as a group, have much worse bedside manner than general practitioners.
While there may be no obvious solution to these problems, here are a few pointers (You may have to adjust these some to accommodate whatever health care plan you may have.):
1. Get on as many waiting lists as possible. Tell each potential provider to call you in case of a cancellation, and be prepared to drop everything and go to the doctor on an hour’s notice. If you have a condition that requires the care of a rheumatologist you need to see someone as soon as possible.
2. When you get in to see a rheumatologist, don’t take your name off the other doctors’ waiting lists right away. That way, if this first doctor you get into makes you uncomfortable, for any reason, you still have your place in line to see another doctor.
3. Research your doctor’s credentials, but pay special attention to how receptive s/he is to your individual concerns and needs. If you are left under the impression that your physician views your body as a mechanic would view a car that needed fixing, you might want to start looking elsewhere.
4. Because of the nationwide shortage, many patients don’t get to see their rheumatologists as frequently as they ought to. Therefore, it is important that you develop a relationship with a good general practitioner you can trust (preferably someone you can get in to see on short notice).
5. Do your homework. Read everything you can about your rheumatologic condition, and whatever treatments are currently available. This will help you evaluate your health care provider possibilities.