This post started out on Facebook, and had to be deleted. I shared a probably-too-good-to-be-true news item about fibromyalgia to criticize it and make fun of it. I should know better. The result was predictable: people started sharing it uncritically, passing it on without my context, or any similar context of their own, or even a hint of reserving judgement. In short, I quickly created a bunch of the same hype that I was trying to suppress. Ugh. Oops. So I took it down.
Here’s the article I was criticizing: “Fibromyalgia Mystery Finally Solved!” The writer is just a teensy bit over-heated about this science news. Such unbridled optimism is kind of adorable:
The announcement … undoubtedly has patients all over the world rejoicing that the mystery of Fibromyalgia has finally been solved.
There’s a problem with this kind of “mission: accomplished!” medical science reporting that usually isn’t mentioned: the lack of empathy for the patient. Most chronic pain patients feel like they’ve been jerked around by experts for ages, told about a zillion conflicting things. The last thing they want is more big hopes: if they buy into it, if they “rejoice,” they risk dire disappointment and pointless distraction.
Hope is always a double-edged sword in chronic pain. Allegedly good news is always uncomfortably awkward, like being given a lovely pie that might be full of berries and sugar … or more pain.
I don’t know if I’ll write about this research yet. Maybe.+ It’s a year old. This isn’t fresh. I went looking for some analysis of this study, but so far I haven’t seen anything but breathlessly optimistic news based on a press release from the company that paid for the research. That company’s motives are unclear to me: not necessarily suspect, but certainly murky. Whatever I write, it won’t contain the words “rejoice” or “solved” or “total cure.”