Tuesday, January 15, 2008

Oh screw you, fibro deniers.

Okay, look assholes.

Before I started to get sick, I had an awesome career stretching out ahead of me. Sure, the arthritis hurt sometimes, but Aleve or ibuprofen usually managed it fine. I was going to do field biology, going out and seining for fish, testing streams, slogging through wetlands, you name it. I was going to maintain aquariums for the public. I was going to wrangle snakes, kiss frogs, and be the first to find the ivory-billed woodpecker in Cuba (yeah yeah don't say it).

I was a Type A personality. I LIVED to work 12+ hours days. Every moment of overtime I could get? I took it. Could I fill in on a Saturday for a sick coworker? OH CAN I! Could I stop in to make the place spiffy on my day off for a VIP? Nothing would please me more!

And then my body rebelled. And I hurt all the time, and no OTC drug would make it stop. I am crushingly exhausted. Going to the grocery store was once fun for me, and now it is a painful, detested chore. Someone brushes my upper arms, and it feels like I was punched.

I didn't ask for this. I don't WANT to have my options limited. I want to do something with my knowledge. I want to be out there in a swamp, looking for rare salamanders and endangered turtles. I want to be on a boat, hauling in a heavy net full of fish. I want to throw myself into working 12, 14, 16 hours a day.

But I can't anymore. I've been wrecked from the inside out by something that people claim isn't even real. I'm accused of wanting to be lazy, of not wanting to have to work for a living. Well, fuck you. Nothing would make me happier than working my ASS off. But I can't, and it fucking sucks.

I'd give anything for this shit to be imaginary. ANYTHING. But it isn't. Your saying it is doesn't make it so, and if you think it is, you can go fuck yourself. You have NO idea. People like you? I shouldn't, but I truly and honestly wish this upon you. You deserve it for being uncompassionate assholes who don't have enough IMAGINATION to empathize with someone whose life is different from your own.


Otter said...

Ugh. It is pretty well established that Moe is a complete and total asshole, and she is pretty much why I hate that website. It had such potential, too.

What gets me is people who just assume that because they don't know anybody with fibro or CFS or restless leg syndrome, those diseases don't, nay, can't exist. Guest what, chumps? Just because you haven't experienced something personally doesn't mean you have any standing to tell someone that their experience is false. The other type of chump is the one who was once misdiagnosed or had a friend or relative who was misdiagnosed with fibro or CFS or clinical depression and then universalizes their own experience to the point that EVERYBODY is therefore misdiagnosed.

Big Pharma ought to work on a pill that helps people extricate their heads from their asses. Now that's a disease that could never be over-diagnosed.

Zan said...

I feel your pain. Literally, unfortunately. I was diagnosed nearly seven years ago with fibro AND Lupus. Whoohoo. Fun fun fun, no? Most of the time, I don't even bother telling people about the fibro, because there are people who don't believe it's real. I just say I have lupus, even though my lupus is fairly mild, was diagnosed early and is basically in remission. It's the fucking fibro that causes me problems. The exhaustion is just....well, you know. Trying to explain to people that when I say "i'm tired' I don't mean the kind of tired they think. Having bones that turn to lead suddenly and muscles that feel like they are made out of concrete...or better yet, when my spine feels like it's made of glass and is about to sever my spinal cord? Oh. Love those days. Hmp.

I was going to be an English professor. I had so many dreams, so much potential. But it's all gone now, because I cannot hold down a fulltime job and attend school. Hell, I'm not even sure I've got the clarity to do school anymore. I hate the brain fog. I just...you can't build a career as an academic when your brain decides to turn into swiss cheese, ya know?

I'm with you. I wish all those people who refuse to believe this disease is real would come down with it. Not forever, because I'm not that mean (yet), but for a month. That's long enough to make you see the light.

Andee said...

Apparently she also doesn't believe ADD exists. Or bipolar disorder (!). Or irritable bowel syndrome. Just straighten up and fly right! Calm down and think clearly! Don't poop so much!

Some people just don't have any clue how "health privileged" they really are. Bleah.

P.S. Loved the "laws of physics" posts too!"

Andee (Meowser)

Fat Gal said...

That woman has obviously never had RLS, or IBS or Fibromyaligia. I have had RLS as the side effect of meds and I have IBS and they definitely exist and they are defnitely no fun and why the hell would I make up those things? HIV and AIDS were medically disputed at one time, does that mean they are fictional too?
People like her make me so pissed off.

Rebecca said...

The other theme that strikes me, in looking through the negative comments, is the one where someone happens to know one person who has fibromyalgia, who happens to be not very likeable, or perhaps struck them as a lazy person pre-diagnosis. So they assume that the fibromyalgia is just an excuse for crapulent behavior and laziness. As though a person is only worthy of empathy for having an illness if they're a saint. It seems a bit like a variation on the theme of smokers "deserving" cancer or I.V. drug users "asking for" HIV. Since those illnesses are generally accepted, people are asking for them. Since this one isn't as widely accepted or its causes as well-explained, people can just deny it's existence.

I think perhaps both of those phenomena link back to people's fear of disease and wanting to deny that they could ever be afflicted with them. ('Cause god knows someone someday's gonna live forever, right?) It's just a super-bonus when they can pretend the condition doesn't exist at all.

(Apologies if this is unclear. 'Tis the brain-fog, or perhaps the rushing to post while at work.)

annaham said...



(Also: Word.)

Rebecca said...

Just wanted to leave the URL for a segment on Lyrica and Fibroymalgia on the Diane Rehm show on NPR. One of the guests is Alex Berenson, whose NYT article has added fuel to the backlash. (I saw it posted on another blog. Forget where, or I'd give proper credit.)


He sounds like a jerk. He can talk about side effects all he wants, but don't freaking deny the existence of the disease.

RioIriri said...

Wow, what a jackass. He actually is claiming that ibuprofen is totally safe and you can take it every day your entire life, whereas opiates are eeeeeeeeeeeeeevil.

Clueless, misinformed, and seems to cling very tightly to his opinion, making no effort to understand or empathize with sufferers.