Which is worse: Having an invisible chronic illness that takes months or years to diagnose or having one with a diagnosis that isn't taken seriously by either medical professionals or family, friends and/or co-workers?
Rosalind Joffe, author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, blogged this week about being glad she has a disease people actually believe exists.
What is it with the lack of respect for illnesses like fibromyalgia and chronic fatigue syndrome?
Since I came down with my mystery illness, I've started reading a fair number of medical blogs, both by patients and by medical professionals, many not even remotely related to my experiences.
For some reason, I've been especially drawn to blogs by people who work in emergency rooms. I suspect it's the dark humor, something I've missed since leaving the newsroom.
But I'm offended when I read references to patients who came into an ER as having a "made-up disease" or being a drug seeker. To those folks, unless there's something that shows up on an X-ray or MRI, it can't be real. Migraines, back pain, fibromyalgia -- none of those things exist to some of these docs and nurses, and even if you go to the ER for something else, they would look at you with suspicion if you had a history of those problems until and unless they found clear-cut evidence of a problem (preferably trauma) they considered worthy of their time.
Here's my deep, dark confession: I was relieved last time I saw my rheumatologist and he told his resident that he had crossed fibromyalgia off his list of possible diagnoses for me because of the collection of abnormal blood tests results I'd had.
Don't get me wrong, I respect fibromyalgia as a legitimate illness that causes much pain and suffering, sometimes to the point of total disability. I do not consider it a made-up disease.
But there are so many doctors out there who either don't believe fibromyalgia exists, or who think it's a psychological disorder. And even more laymen who think it's a bogus diagnosis.
Even (especially?) the media has little to no respect for fibromyalgia. Earlier this year, the New York Times (not my favorite newspaper) inflamed the fibromyalgia community with an article about the approval of the drug Lyrica to treat fibromyalgia. The article was insulting to people who suffer with fibromyalgia from its start: "Fibromyalgia is a real disease. Or so says Pfizer ..."
It's bad enough to have an invisible chronic illness and constantly have people saying (or thinking), "But you don't look sick ..." without also having them roll their eyes because they think you're either faking or that it's all in your head.
What does it take to get some respect for the fibromyalgia community? And the rest of the invisible chronic illnesses?
5 months ago