Friday, June 26, 2009

What's In A Name?

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?


Shiri said...

Yes. Yes, yes, yes, yes, yes. Did I ever tell you about the GP (with an award on his wall from Congress, by the way) who told me the pain in my feet (and legs, and hands, and oh, body-wide) was because I wasn't wearing the right shoes? The right shoes?!

Right, not RSD, but the wrong shoes. Clearly, I'm drug seeking, because drugs like Lyrica are just so much fun.

I didn't realize I was still bitter. Point is, yes, I'm with you. Now if only I'd have some kind of test result that would confirm something....

Sherril said...

Excellent post, Aviva.

I expect it will just take time and research results to whittle some respect out of the medical community in general. I read that the same has happened with other diseases like lupus and MS; they do have credibility now that we know more about them.

What's really irritating me currently is the Cymbalta commercial that's airing constantly in my area where at the end they say 'if you suspect you have Fibromyalgia, ask your doctor about Cymbalta.' Forget about being actually diagnosed!

This from (heavy sigh) a person diagnosed with FM in 1989 - one year before the American College of Rheumatology even came out with the Diagnostic Criteria. At least back then nobody (including me) had ever heard of it so nobody had an opinion. I was just glad to have a name for what was wrong with me.

Aviva said...

Shiri: Ugh on that GP! Yeah, and I'm sure it would also help if you paid him $$$ for prescription orthotics to put in those special shoes! Here's hoping we both get our diagnoses soon!!

Aviva said...

Sherril: When I mentioned to my rheumy that I'm already on Cymbalta and wouldn't it have helped some if I had FM, he and his resident both shook their heads and said they hadn't seen any patients benefit from Cymbalta. :-( I'm guessing the Cymbalta ad, which I haven't seen, is pretty similar to the ads I used to see for the IBS drug (that I think has since been removed from the market) ... it's a major problem with drug makers advertising on TV, I think.

I hope the research results trickle out soon. I know they're starting to.

Kairol Rosenthal said...

I traveled around the U.S. recording conversations with young adult cancer patients for my book
Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s. In Alabama I met you young woman who tried to get a diagnosis for two years and everybody thought she was a hypochondriac. When they finally found the football sized tumor in her chest she cried with relief. "Oh, finally they found something that they will take seriously," she replied.

During my path to diagnosis I quickly learned how much it sucks to be told that nothing is wrong with you and that you have a disease that is not real. I don't wish cancer on you, nor do I envy you for having to live with a disease that nobody takes seriously. It is just so wrong.

Great post. Nice to find your blog on Patients for the Moment - feel free to check out/ link to mine.