I don’t mind most patient lists either. A list like this one is quite helpful.
But. A list like this one will give any clinician an overwhelming sense of being sucked into a vortex of negative energy. I have removed anything that might identify this patient in any way, but I will tell you that this patient is in their 20’s and is remarkably healthy, despite having had these symptoms for years.
Healthy, but not well. When you see a list like this, you know that you are about to embark upon one of the least satisfying clinical relationships in the world. Because this is a person who, for some reason, must be a Patient. This is a person who has no interest in being well, because they feel so rewarded by being sick. Why? I have no idea. Personally, I find being a Patient absolutely horrifying; I will deny that I need help until I am lying on the floor, and even then I’ll refuse to go to the ER.
Wanting to be a Patient has no relationship to how sick you are. I have one patient with a terrible neuromuscular condition who comes to my office on a ventilator, in a motorized wheelchair that he steers with the one finger he can still move a tiny bit. When I ask him how he’s doing, he has to wait for a puff from the vent to answer, “Great!” (I doubt my aversion to being a Patient would take me quite that far, but I like to think it would.)
It’s very hard not to take these list-writers by the shoulders, shake them, and shout “Get a life!” Maybe I should, because what I do—nod sympathetically, gently suggest exercise and possibly antidepressants, and try my best to avoid the unnecessary testing that will involve random false positive results that will then engender more testing—doesn’t seem to help much.
It seems a miserable kind of life, but then again, how would I know? Perhaps this feels like fun for them. Perhaps what they need is a Patient Theme Park: giant stuffed medical personnel walking around and giving injections, an MRI Tunnel (with Realistic Banging Noises!), a 24-Hour Urine Collection Log Slide, lots and lots of blood draw concession stands, a place to pose for overpriced photos of yourself that make it look like you’re intubated, and people hawking baseball caps emblazoned with Another Sufferer of A Really Rare Disease Whose Doctor Totally Dropped the Ball* and t-shirts that read I MAY LOOK FINE, BUT I KNOW MY BODY.
*Not that this does not ever happen, OF COURSE. I have dropped a few balls myself. However, most bad things will “declare themselves,” as we say; they get worse and become diagnosable. Not-bad things usually go away, and the less you test for, the better off you will be. As I teach my residents, “follow” is not a dirty word.
UPDATE: To all who are saddened/angered by this, let me say a few more things:
- There are many, many crappy doctors, I know. Believe me, I know. I do not excuse any of them. They’ve messed me up too.
- Most of us have had frightening, unexplainable symptoms at some time or another. That doesn’t make us Patients.
- Yes, most people just want someone to listen carefully and, if appropriate, reassure. I love listening to people, watching them, finding out what it is that frightens them about their symptoms. I’m not talking about those people here. I’m not talking about you here.
- There are a few diseases that have multiple seemingly unrelated symptoms that can be overlooked. I test for these where appropriate. That patient who wrote the list? Had had multiple tests already.
- These folks can get sick too, and that’s frightening, because they do fall victim to the crying-wolf problem. It’s part of what makes them so tough as patients.
- There are also, I am quite sure, many diseases that we cannot yet diagnose no matter how many tests we do. We doctors must remain humble about this.
- And know this: if you’re suffering, I wish I could help you.