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Please Stop Calling ME/CFS An "Invisible Illness"

Please Stop Calling ME/CFS An "Invisible Illnes"

i know a lot of people use this word to describe ME/CFS and a few other illnesses. But it is a very bad choice of words. Linguistically it is way too close to saying "non-existent illness". George Lakoff (a Linguistics expert and professor at UC Berkeley who often writes incredibly insightful op-Ed’s about linguistics in politics and how they affect the political leanings of the country) would say to never use it. If my illness is invisible why should anyone care? We generally don’t care about things that are called invisible. Most things that are called invisible are questionably existing. Ghosts are invisible. "Do you believe in ghosts?"

I know you may feel invisible and you may feel like a ghost. I sure do. But when we develop the common language that we all use to talk about ME/CFS we need to think about how it is perceived by other people not how it feels for us.

ME/CFS is just as visible as any other chronic illness. Can you see cancer and in it’s early-mid stages? No, and when you can, it’s the symptoms you see not the cancer itself. Just like ME/CFS - you can see it in the symptoms of severe cases. Can you see MS? Or HIV? No.

Bacteria isn’t called invisible it’s called too small to see. You just need the right tools, methods and understanding to be able to see it. Same with ME/CFS. We don’t have the tools, methods or understanding to see it yet. But we will soon. ME/CFS is not invisible we just don’t know how to see it yet.

Calling it an "invisible illness" really sends the wrong message to people. And it’s not up for debate. This is the science of linguistics. It’s how people’s brains work. Once again, "invisible" is way too close to saying "non-existent". When you call ME/CFS "invisible" people will think something very close to "non-existent".

I think if you called black people invisible right now as a way of explaining police brutality the response would be pretty negative. People would be offended. I’m not seen properly but it’s the seer who has the issue not me. I’m right here. Anyone can see me if they look. They just don’t know how to see ME/CFS yet and others who understand even though they can’t physically see it are turning a blind eye. "Unseen" is more accurate but maybe less "juicy".

Please stop using the word "invisible" or the phrase "invisible illness" to describe ME/CFS. It hurts awareness and it hurts fundraising.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.

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