Just found this really great NYT article from 2009. It tells the story of Judy Robinson, who developed fibromyalgia after having abdominal surgery. It took her four years of searching for answers and being made to feel as though she was crazy before she found a doctor to diagnose her.
I love this article and wish I could just copy and paste the whole thing here, but I’ll have to settle for a few choice quotes:
If there is a circle of purgatory that Dante forgot, it might be the one reserved for fibromyalgia sufferers. The problem isn’t just pervasive pain. It’s the challenge of having a condition that is not well understood. It doesn’t help that there is no objective medical test to confirm it — no blood test, no cheek swab, no X-ray — just a patient’s subjective reports. Nor does it help that there is no cure. Many physicians don’t want to be bothered with incurable patients.
If doctors don’t sympathize, why would friends? How do you explain to people that you have no broken bones or burns or even infections, yet your body hurts all over? You look fine, yet beg off work and social engagements. Are you a malingerer? Are you just trying to claim disability? Are you simply crazy? And why don’t you get better?
The article also touches upon some of the ways that gender roles have made doctors less likely to take fibromyalgia sufferers seriously. Over the past few decades, many doctors wrote off fibromyalgia has something that happened to women because they were “hysterical” and “over-emotional.” These preconceptions also made it harder for men with fibromyalgia to be taken seriously, because fibromyalgia was something that “only happened to women.” (This just confirms what I always say when people start to say negative things about feminism: hey, our current system of gender roles doesn’t always work out well for men, either).
I have to stop myself now before I plagiarize the entire article, so check it out!