I wanted fibromyalgia to be taken seriously. Guess I got what I wanted!

by Jenni Prokopy, the Editrix

Ever since I was diagnosed with fibromyalgia more than a decade ago, I've wished that folks would take my illness seriously. A few examples off the top of my head:

The doctor who first diagnosed me (who then handed me a flimsy pamphlet, told me to take Advil and get ready for a life of pain)
Fred, the person I wrote about months ago who told me to "get over it"
An acquaintance who brought up the subject every time we met, and then proceeded to remind me that "many people don't believe fibromyalgia is real" (until I cut him out of my life)

I've moaned and groaned to my friends and hubby Steve for years about the frustrating negation of my experience and general denial of fibromyalgia's existence. It's difficult to explain to people, over and over, that even when you look awesome (come on, you know I do!) that you feel like total crap, and you're sometimes limited in your activities because of it. That gets old real fast. I'm sure that to some, I've been a broken record. (But I'll go easy on myself, since I haven't only complained, but also tried to educate in a patient and kind manner. Mostly.)

Shedding new light on fibromyalgia

But in recent years (especially the past 18 months or so), things have really been looking good for us fibroBabes. The U.S. Food and Drug Administration approved Lyrica, the first medication to be prescribed for treatment of fibromyalgia. I was jumping for joy at that news, and that was BEFORE I started taking it and experienced a subsequent major reduction of my symptoms. Sure, yoga and meditation and dietary changes are all awesome, but a pill? A pill that makes me feel better? That's some major icing on my cake, baby! So the commercials are cheesy and annoying. I got over it. (Aw, Fred would be so proud!)

And the National Fibromyalgia Association, along with other advocacy groups, helped get the condition on the national radar—pushing for improvements in chronic pain care and research legislation, boosting its media presence, creating resources that reach out to ALL those who live with fibromyalgia, including us younger Babes. (Back when I was diagnosed, I was the only one without gray hair at the support groups I tried out. Disheartening, to say the least.)

Finally, the online communities and outreach...it's been incredible to watch the movement grow. When I started ChronicBabe, there was next to nothing going on, and now there are myriad sites and blogs for folks with fibromyalgia. Men even have a presence (they do make up approximately 10% of the fibro population, after all). I get a little misty-eyed when I think of all the resources available to young women who are diagnosed today, compared with the dearth we lived with a decade ago. Google "fibromyalgia" today and you'll get nearly nine million results. (Compare that with the measly 276,000 results you would have gotten in 2001.) It's a true gift.

All aglow, then snuffed by insurance

I've been all aglow in the enlightenment, enjoying the fact that soon I won't have to educate every person I mention fibromyalgia to. (Of course, as a health writer, I would LOVE it if MS Word would finally stop telling me I'm spelling it incorrectly.) Don't get me wrong—I haven't been marching around, shouting about fibro at the top of my lungs, because it's not my job to teach the world—but I always answer questions for newbies.

So when I had to explain it recently to a new insurance rep, I thought, well hey, at least I can describe it succinctly to her and then she'll know it when she sees it next. But I felt a little apprehensive that I had to explain it at all...had she really not encountered anyone with the condition yet? She's not green—she's been at this for a while. I decided not to overthink it.

Apparently, her company thought otherwise. They must have done some pretty tough thinking on the subject, in fact, because they just turned me down for long-term care insurance. Because I have fibromyalgia. Jerks!*

Uh-huh, I'm a little bitter. For now, at least...

Bitter really isn't the right word for what I'm feeling. I have a bunch of words I won't use here. But I will say I'm pissed off, frustrated, disappointed, livid, confused...I'm a whole bunch of emotions. I know I'm lucky that this is the first time I've been turned down for insurance; there are plenty of people in this country who are far worse off than I am.

What's most confusing is that my fibromyalgia is very well controlled. In fact, my pain doc told me a while back that I am one of the most active fibro patients he has ever treated! I own my home, I operate two businesses, I founded and run a volunteer organization, I work out almost every day, I travel, I have hobbies—I'm a pretty busy gal for someone with this condition.

And my medical records should indicate that. If you pull my (admittedly, ENORMOUS) medical file you will see a stretch years ago where I wasn't working, where I wasn't exercising much if any, where I was taking a ton of medications for the condition. Now I take just two medications for it, one of which is relatively new and has made me EVEN MORE active in recent months, allowing me to take on new projects and pursuits.

I'm a productive member of society: I boost the economy, I contribute to my community, and I'm damn awesome. I care a great deal for this body of mine and I work hard to keep it operating as best I can, which is better than a lot of people I know.

I just don't get it. Why was I turned down for insurance because of fibromyalgia? Why not the asthma, which sent me to the E.R. this week? (A story for another day, dear readers; suffice to say I'm fine now.) That makes no sense to me.

But it makes sense to hubby Steve. Here's what he said when we got word I was rejected: "Well, you wanted people to take fibromyalgia seriously. Guess now they're taking it seriously."

So this is where we are now in the fight to have fibromyalgia considered a real disease. We've lobbied for years, speaking to anyone who would listen about our experience. We've fought for research and legislation, for new medications and treatments. We've bared our souls with the world in hopes that we would be heard and taken seriously.

And it seems like now, in an ugly twist, we ARE being taken seriously, in classic insurance company style. We—excuse me, I shouldn't speak for everyone—I am being lumped into the caste of uninsurables without a second glance. I don't even know if the company looked carefully at my history, because the letter of explanation offers, well, no explanation beyond the basics. It seems I'm being judged not on my entire history, not on all the hard work I've put in every day, but on a label. And that's a shame.

Whew! Good to get that off my chest

Hope this little venting session doesn't get me blackballed from insurance for life. I normally wouldn't get quite so personal, but this issue is so pertinent today I just can't keep quiet. And in no way am I alone. So if you want to chime in, shoot me an email (put "rejection" in the subject line) and I'll add some of your comments to the bottom of this article.

*P.S. To be fair and clear, my insurance rep is not a jerk (she doesn't decide who gets covered). In fact, she's a really nice person, who's trying to find me some alternatives.

Posted: 10/3/2008 in Venting

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By Date:

I wanted fibromyalgia to be taken seriously. Guess I got what I wanted!

Shedding new light on fibromyalgia

All aglow, then snuffed by insurance

Uh-huh, I'm a little bitter. For now, at least...

Whew! Good to get that off my chest