I use technorati to keep a watchlist on the terms ‘arthritis’ and ‘rheumatology’. After all, this is my specialty, right? I should try to keep track of what’s being written our there!
My initial thought was that I would pick up other doctors or researches talking about things in joint land, but I was disabused of that idea very quickly. I clearly am the only rheumatologist-blogger on the web!
What I have picked up are a number of blogs, often written by young women, who are clearly unhappy with their health, and clearly unhappy with their interactions with the health care system. They feel slighted, misunderstood, and trivialized. I wish I could say that I was surprised by I’m not.
You see, rheumatologic diseases can be very difficult to diagnose and to treat. Unlike cardiologists (heart doctors), pulmonologists (lung), nephrologists (kidney), etc. ‘our diseases’ often affect many different organs at once, and can often have confusing arrays of seemingly unconnected symptoms that don’t seem to ‘make sense’. Many of our diseases are often also ‘rare’, and I mean rare. Some of these diseases affect something like 1 in a 100,000 or 1,000,000 patients, and thus other doctors often just aren’t that familiar with them and with how they manifest.
Therefore, we often see difficult cases: the cases that other doctors can’t put together, the cases where the patients have vague, nondescript symptoms that don’t seem to ‘add up’; the cases where something is clearly going on but it’s something that just doesn’t seem to fit into a nice neat little diagnostic box. And, quite honestly, the cases where other doctors just don’t think there’s a real, or ‘organic’, disease process going on, and they want someone to confirm this, and help them convince the patient that that’s the case.
I’m glad to say that I really don’t think the last case is all that common, but it does occasionally happen. Usually, a referring doctor just wants to make sure that he/she is not missing something.
Further complicating matters is that, unlike many other specialties, we tend to have very few ‘tests’ that we can do that will tell us with certainty that someone has or does not have a disease. Therefore we rely, maybe more than most doctors, on a good history and physical exam, and pattern recognition helped along by guidelines endorsed by our professional society, the American College of Rheumatology (the ACR).
One of the results of this, unfortunately, is that we see some patients and can’t figure out exactly what’s wrong – at least not at first. We know that there is something wrong, but often we’re not sure exactly what. This isn’t by any means the majority of patients, but it is frequent enough that patients are going to be confused. Often we just have to say something along the lines of: ‘I’m not sure what’s causing your discomfort right now. But I’m going to try to help you deal with the symptoms, and check in with you regularly, and we’ll just have to try to see what else develops that will help us figure this out.’
This can be very unsatisfying for patients. They’re often uncomfortable, want an answer, and want whatever it is to go away. And unfortunately, we doctors are far from perfect and often explain ourselves poorly. Or we have five other patients waiting, feel hurried, and just don’t (feel like we) have enough time to spend with this particular patient right now so that we can answer all his/her questions.
The result is that patients feel like we trivialize them, dismiss them, don’t take them seriously, don’t know what we’re doing, whatever. And often none of these is true.
(And speaking of trivializing, when I mention above that many of these patient-experience blogs are written by young women, it’s not because they tend to be the most ‘difficult’ patients, or because they have some kind of unique pschological problems. It’s because rheumatic diseases often affect women disproportionately.)
So here is my notice of intent to start a new series of posts, which I’m calling ‘Medicine for Dummies’. (I am not implying that anyone is actually dumb! This is just a play on the ‘X for Dummies’ books, and is meant to imply lack of knowledge, not inability to know.)
My intention is to try to make the process of seeing a physician a little more transparent and to help understanding between doctors and patients. If a patient comes away from a doctor visit feeling trivialized, then something is seriously wrong. So my idea is to help you, the reader and presumably non-physician, understand what’s going on in your doctor’s head. What is she looking for? Why do I not understand what she is telling me? Why does he seem so clueless? Why is he ignoring what I’m telling him?
Potential topics of discussion include:
- The first visit – what does this doctor want from me?
- Follow-up visits – why am I seeing this doctor again?
- The unclear diagnosis – why does this doctor not understand what’s happening?
- Treatment decisions – why does this doctor want me to do this, and what if I don’t want to?
- Physician and patient responsibilities
- Conflicts between ‘traditional’ and ‘alternative’ medicine
- What do doctors really know?
- Medications – benefits and harms
- The hospital – how to be an inpatient
At least that’s the plan as it stands right now. If anyone has other questions or topics for discussion, please let me know: no guarantees, but I’ll at least consider it seriously.
And if you’ve read this and have interest in a series like this, please drop a comment and let me know. A little encouragement goes a long way!