#overdiagnosis

Look, “Overdiagnosis” is Not a Thing.

When a particular illness/syndrome/disorder/disease gets talked about as being “overdiagnosed,” there’s something happening there, and it’s not what the hype around it would have you think.

People aren’t getting diagnosed with things they don’t have because it’s “trendy” any more than increases in diagnoses of a thing when understanding and awareness rises mean that there’s suddenly an “epidemic.”

I’ve seen this happen with the syndromes I’ve been diagnosed with already, in the years after my childhood diagnoses in the dark ages of the 1990s, and I’m seeing it now with the condition my symptoms, family history, and common comorbidities make me suspect. I worry about whether I will get an honest assessment or a doctor who will dismiss my concerns because they feel like some kind of cosmic quota for this type of wonky body has been met.

Here’s how it really works:

Condition is first documented and considered to be very rare. People who have it receive access to necessary supports and resources. ==> Condition begins to gain some traction as people who previously had no answers for their problems are found to meet diagnostic criteria. ==> Awareness spreads and others looking for answers realize they also meet criteria and seek out assessment. ==> “Rare” condition turns out to be something much more common than originally thought, and more people are getting diagnosed and seeking supports. ==> Somebody in charge doesn’t like that. ==> Criteria gets changed so only the most typical or severe cases fit anymore. People with mild or atypical forms get a new, less-supported diagnosis or no diagnosis at all.

And the conditions were never rare at all, they were just underdiagnosed. “Overdiagnosis” is a construct used to reset the status quo of UNDERdiagnosis that keeps people thinking there are way less disabled people than there really are.