If the Name of Your Illness Changes Every Time You Switch Hospitals

"Here they say it's this illness, there they say it's that one… what on earth is my illness?"

When I get this question, the first thing I say is this. There is nothing wrong with you. And the doctors who treated you may not be mistaken, either.

There is a reason for this situation.

A diagnosis is a "label"

A diagnosis is not an object that actually sits inside the body. It's a label attached by grouping together the things that are currently visible.

So depending on what you look at, the label changes. In an exam room that looks at the digestive system, a digestive name gets attached; in an exam room that looks at the nerves, a neurological name gets attached. It's the same person, but only the label gets swapped out.

This isn't because anyone is mistaken. Each one saw it through the window they look through. It is like the person who touched the elephant's leg and the person who touched its trunk describing different things — neither of them is lying.

A diagnosis is a photograph, and the illness is a video. Three photographs may look different from one another and still be three scenes from the same film.

The characteristics of a body whose label keeps changing

When I see these people in my exam room, there's a common thread.

The symptoms are scattered across many places. Digestion is poor, sleep won't come, the heart races, there's dizziness, and it hurts here and there. It's not all explained by one department.

The tests are mostly normal. Since there's no major abnormality, each exam room says "there's no problem here." And yet the body keeps struggling.

The symptoms move around. This month it's the stomach, next month the shoulder, then sleep. So each time you go, a different name gets attached.

In these cases, I don't re-attach a label

If I add yet another name here, the labels just increase by one. That doesn't help.

Instead, I change the question. Not "what is the name of this illness," but "what, in this body, is currently tilted?"

If several places are shaking at once, I look at the possibility that something that regulates those several places together has been shaken. The regulation of the autonomic nervous system, the state of the gut, the baseline of metabolism and inflammation, the rhythm of breathing and circulation — these don't belong to a single department, and yet appear across several departments. (When symptoms that seem unrelated come together)

So do you treat just any illness here?

No. If I said that, I'd become just as irresponsible.

I distinguish between two things.

One is the possibility of an illness not yet found. "The tests are normal" does not mean "there's no illness." It may simply not have been caught yet. So I first sweep through the warning signs. Is weight dropping, are there night sweats, does fever persist for a long time, is there blood coming out mixed in? If it catches on any of these, I recommend testing first. This takes priority.

The other is a state where regulation has been shaken. It's a case where the parts are perfectly fine, but the environment in which those parts sit has tilted. It's hard to catch with tests, each department says it's normal, and yet the body keeps struggling. This is the place I work on.

That said, a differing diagnosis does not mean you need not trust the tests. It means there are several windows, not that the windows are clouded.

These two must not be mixed. I first rule out the former, and then I look at the latter.

What I do in the first visit

There is one thing I do first. I lay out the test results you have brought in date order. Then something like this sometimes becomes visible — digestion gave way three years ago, sleep came apart about a year later, and then the pain attached itself. Each hospital gave a name to the cross-section it saw at its own point in time, and laid out in a row, those can turn out to be different points along one line.

I ask you to bring all your records so far. Test results, prescriptions, diagnoses. I look at all of them without discarding a single one. I lay out the labels attached at various places and find the common thread. Even when the names differ, there's often the same tilt underneath.

I set up the timeline. What started first, and what followed. What came first is usually closer to the root.

I decide what can be worked on right now, starting there. Sleep, digestion, breathing. I restore these first and watch how the rest moves. I don't work on everything at once.

And I set the goal in advance. For how long we'll try, and if what changes we'll continue, and if it doesn't work whether we'll change direction. I don't keep you coming vaguely and indefinitely.

Cases where you should go to a hospital first

If your weight drops without a clear reason, if a fever persists for a long time and night sweats come with it, if blood is mixed in your phlegm, stool, or urine, if a sudden severe headache arrives with slurred speech and weakness on one side, if swallowing gradually becomes harder, or if the pain grows severe enough to wake you from sleep each night — get tested first, before coming to me. I don't begin treatment without this confirmation.

One story instead of a new name

A changing diagnosis means that a single picture explaining this body has not yet been made.

I don't try to give you a new name. Organizing what tilted in this body, and in what order, into a single story — that is what I can do.

If that story is right, the body answers. If not, we revise the story. That's how we'll search, together.

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References

• That the same patient is given different names in different departments is something international researchers name as a problem in itself — BMC Medicine, 2020

Written by Dr. Heo Ji-young (PhD in Korean Medicine Pathology, Kyung Hee University · former Research Professor of Herbology, Kyung Hee University)