What Makes a Disease Real?

Doctors can be a skeptical bunch. I have colleagues who flat out deny that a condition can be "real" unless they can observe it or detect it with a test.

Yet, many physicians deal with conditions all the time whose symptoms can't be measured. For example:

• Depression—A depressed person will usually have normal physical examinations, blood tests and, if necessary, a normal brain MRI.

• Headaches—Most people who have headaches have normal test results.

• Joint pain—People can have joint pain (arthralgia) without any joint inflammation (arthritis). The pain could be due to tendonitis, bursitis, vitamin D deficiency or thyroid disease. But often we can't find any cause of the pain.

Doctors rarely do extensive testing for these conditions because abnormal results are rare and the tests are almost never helpful.

Millions of people are affected by diseases that have "subjective" symptoms and can't be confirmed by observation or tests. These include fibromyalgia, most headaches (including migraine), irritable bowel syndrome. So, does this mean that these conditions aren't "real?" They're certainly real to the people suffering with them.

"It's all in your head"

When a symptom can't be explained, it doesn't mean that it's imaginary or due to a mental illness, psychiatric disorder or psychological distress. That's what is implied when a doctor tells a patient, "It's all in your head." At the very least, we should assume that the pain or unpleasant experience is real regardless of test results.

In the end, all pain is perceived by the brain. So, in a way, all pain is "all in your head." Yet there is a tendency to relegate unobservable symptoms to the realm of the psychiatrist. Never mind that a psychiatric disease is "real" even when imaging and blood test results are normal. If you've ever witnessed psychotic behavior or been with someone who is severely depressed, it is clearly real.

Unexplained symptoms could be due to a disease that hasn't been detected yet. Ideally, doctors and patients should identify the cause if possible, rule out a dangerous condition, and treat the bothersome symptoms. And that's true whether the symptom is measureable or not.

What's in a name?

We usually expect the doctor to make a diagnosis and recommend a treatment when we have a problem. It's reassuring to know that your particular problem has a name. It means that other people have experienced it and that studies have assessed the effectiveness of various treatments.

Yet for many conditions, the name is only a label. It's convenient to apply a name to a particular combination of symptoms, even though the cause is unknown and no clear-cut abnormalities can be found. Examples include fibromyalgia syndrome and irritable bowel syndrome. Assigning a name to symptoms can be reassuring but it does not make the condition more or less "real."

Focus on improving symptoms

There are times when even the smartest health care provider can't come up with a logical, compelling or even reasonable explanation for a person's symptoms. In those cases, it's important not to get too focused on explaining or labeling them. Instead, the doctor should focus on:

• Not missing some important clue

• Treating the symptoms

In many fields of medicine, doctors spend all day improving symptoms rather than making a diagnosis. Headache specialists, for example, must be convinced there is no brain tumor, no meningitis, and no other serious and treatable cause of the pain. But once that happens, attention turns toward treatment rather than on sorting out a specific cause.

This can be frustrating for both patients and doctors. But until we understand the specific causes of common conditions like headaches, back pain, ringing in the ears (tinnitus) and chronic fatigue, controlling symptoms, not a name, is what will help the most.

The bottom line

Once again this shows that there's more uncertainty in medicine than most people think. But that doesn't mean a person is imagining their symptoms.

As I see it, debating the "realness" of symptoms is often a waste of time. Unless a person is deliberately "faking" symptoms (a rare event in most doctors' practices), they are just as real as for those with an observable, measurable and testable condition.

Having names are nice, but they are not always helpful. All other things being equal, I'd rather have a nameless condition that's well-treated than a definite, but untreatable diagnosis.

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