A well-known professor of neurology was giving a lecture to a large audience of internal medicine physicians.
“If a patient says they have a headache, do you believe them?”
The audience nodded in agreement.
“But you can’t do a blood test for a headache. A headache won’t show up on a CT or MRI. How do you know they truly have a headache? How can you confirm it?”
The answer, the professor revealed, was that no one feels compelled to “confirm” that someone has a headache because most of us have experienced a headache. A person merely saying their head hurts is enough to diagnose a headache. It is easy to relate to a pain someone is describing when you yourself, or perhaps a good friend or relative, have experienced similar symptoms.
What can be more challenging is when we are trying to describe a feeling that is not as commonplace as a headache. Sometimes we are experiencing a symptom that will reveal itself as a disorder on a blood test or radiological study. But often, there is a vague discomfort or malaise, that may not show up on any test. The symptoms may range from slight to severe enough to keep someone from being able to go to work or school. Something is wrong and it isn’t clear what that something is.
But you know your body best. You know when something has changed or if something isn’t right. And we want to be able to give a name to something that isn’t right. Because once we have a name for it, we can try to find a reason for it, and then hopefully a way to make it better.
In an era of seemingly endless test options, it can be difficult to accept the fact that we often don’t have a test for many ailments. There is no reliable test to confirm IBS, myalgic encephalitis/chronic fatigue syndrome, long-Covid, various pain syndromes, and a host of other illnesses. We should recall that, before we had widely available imaging tests for conditions such as multiple sclerosis (MS) or endometriosis, patients (who happened to be mostly women in the case of MS and all women in the case of endometriosis) were dismissed as “hysterical” or told it was all in their heads. Abandoned by their doctors, they were more easily victimized by the snake-oil salesmen of their day as they searched for something, anything, to get themselves better.
It is said that history may not repeat itself, but it rhymes. Being taken seriously when we know something isn’t right with our bodies is still a challenge. The big difference today, is that we are now able to share and hear lots of stories from around the world. And there is strength in numbers. It may not raise a diagnosis of IBS or long-Covid to the level of understanding that most of us have of what a headache feels like, but it hopefully will increase empathy for those who experience symptoms for which there is no quick and easy test.