I saw a patient last week who was suffering from muscle and joint pains.
His symptoms began more than ten years ago and involved his extremities and back, waxing and waning, sometimes mild, sometimes more severe. He was a computer programmer but had trouble typing, which limited his ability to work. He loved basketball but was afraid to play: a few weeks ago he played a game and suffered the consequences for many days.
On examination, everything was normal from head to toe, including his bones, muscles and joints. There were no rashes, murmurs, or other signs of systemic disease. There were no labs or studies for me to review but he reported that batteries of blood tests sent during a disease flare had all come back normal.
Over the years he had been seen by various doctors, including specialists such as orthopedists and rheumatologists. Everything came back negative; he carried no clear diagnosis.
When I asked him what treatments he had tried, the list was surprisingly short - sometimes he wore a brace or took a couple of Advil but that was essentially it. When I expressed surprise at this, given his degree of functional impairment, he explained that he wanted to know what he was treating. He was still looking for a diagnosis. To treat a condition that had not been named felt like giving up, or at least heading down the wrong course.
How do we come to name things? In the world of language acquisition theory there are basically two main camps: Innate vs. Learned.
Noam Chomsky is the high priest of Innate Language theory, though his ideas can be traced back to Descartes and Plato. Chomsky proposed that we are hardwired to learn language. He believes that all languages have similar structures and devices, which he calls “universal grammar,” and posits a theoretical LAD - language acquisition device - located somewhere in our brains, that evolved for the unique production and comprehension of language according to these rules.
The high priest of Learned Language theory is probably B.F. Skinner, who believed that we learn language the same way we learn everything else, through operant conditioning, or positive and negative reinforcement. We are taught a word, and if we get rewarded for using it correctly then we learn it; if not, we don’t. Our brains do not come hardwired for language or any other kind of knowledge - they learn by doing.
Skinner’s ideas trace back to John Locke and even Aristotle. Locke is famous for the idea that our minds begin as a Tabula Rasa - a blank slate - onto which knowledge is inscribed over time.
This dichotomy between Innate and Learned Language is a version of Nature versus Nurture, and like all such debates, the truth lies somewhere in between.
Either way, everyone agrees that naming things is an irresistible human impulse that we can’t live without.
In the Bible, the first job that God gave to Adam was to name all the animals, which must have been quite a challenge. I can relate. When Rachel was pregnant with our first child, we had a tough time coming up with a name. There were so many options, a tyranny of choice.
There were names we liked and names we didn’t. There were people we could name after and people we couldn’t. The possibilities were endless, and they were all more or less equal, in the sense that she was not born yet, so we didn’t know her as a distinct individual who fit one name more than another.
Even after she was born, still we dallied, unable to decide. Finally, threatened by the prospect of going home with a child officially named “baby girl,” we picked Noa Alabama. Noa because we loved the name; Alabama after the iconic character in the Quentin Tarantino movie, True Romance.
Once chosen, the name settled on her with a swift finality that was kind of amazing. From a girl that could have been named anything, she almost instantly became a girl whom we could not imagine being named anything else. It’s almost as if it made her more real. Nothing had passed but time, and yet while choosing the name felt whimsical, the idea of changing it now felt radical.
Which is why it sometimes must be done.
I recently had a conversation with a thoughtful and articulate young person who recently transitioned to gender nonbinary, about their change of name. Here is some of what they said:
“I never particularly had anything against my old name. But I felt like if I kept it, it represented a part of me that changed. Because I’m not a girl. And I’m not a boy either. I’m [new name]. And I feel like if I keep the name [old name] it’s automatically identified as a feminine name.
“So having that was a bit uncomfortable for me. So I thought about it and I was like, well, what is my name if it’s not [old name]? And after a while it just hit me - and I was like, yea, [new name] works. That’s who I am.
“A “dead name” is just a name that is no longer used, and is basically dead to the person who used to use it. The name still exists - other people still have that name - but it’s just dead for me - if somebody calls me [old name] it’s like, oh, that name is not mine; it’s dead.”
Names. We need them but they don’t always help us. Sometimes they clarify, sometimes they obfuscate, sometimes they damage. The manicured path they lead us down can turn out to be a trap. The trick is to acknowledge their importance without letting them limit what we see. They are like packaging that makes a thing easier to handle, for better or for worse, not to be mistaken for the thing itself.
In medicine, the presentation of a clinical case is highly formulaic. The acronym for the structure is SOAP - subjective, objective, assessment, plan - which mirrors the Western medical hierarchy of value in ascending order. Subjective symptoms are less important than objective signs, and both serve the purpose of a diagnosis that drives the plan.
I have heard thousands of presentations from medical students, residents, and peers, and I admit to viewing those that are not structured in this way as sloppy and unprofessional. But I can also see that not all patients are best served by a matrix that places signs over symptoms, and the diagnostic label above all else.
Eastern medical traditions, such as Traditional Chinese Medicine, are more symptom-centered. If Western medicine views the body as a machine and illness as a malfunctioning part, Eastern medicine views the body as a network of channels and illness as an imbalance in the flow of energy through them.
Both traditions rely on a history, exam, procedures, and medicine, but for a patient like mine, with medically unexplained symptoms (aka MUS, thought by some to comprise the majority of conditions seen in primary care), the Eastern approach has a lot of appeal: prioritizing the patient’s subjective experience feels like a way of getting past the name, as it were, and closer to the thing itself.
Mind you, none of this was going through my mind while I was in the exam room with my patient. But I knew from experience that if I had any chance of helping him, it would not be by seeking the diagnosis that everyone else had missed over the past ten years. That story makes for great entertainment (ie The Good Doctor, or the Diagnosis column in the NYT magazine), but not for great real life.
“What if we forget about naming it,” I said, “and find a way to treat it anyway?”