The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.
For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.
No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)
It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.
I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.
I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.
That’s no small order.
But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?
And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?
I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.
But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….




