Butterfly Cauldron

Thursday, April 03, 2008

Sweet Jesus, I hate fibromylgia

I have an invisible disability. I look like anyone else, healthy enough. I look younger than my age. I look like I should be the picture of health. But I'm not. I'm not even close.

People comment to me, "You're always so tired." Yes, I am. I'm always very tired. When I say I'm tired, I'm not saying it for attention. I'm not saying it for sympathy. I'm saying it because it's the truth. When you look at me and say, "Are you feeling ok?" I usually lie to you. Because you don't want to hear the truth. Because when I tell you the truth, you don't know what to do or say. Because there isn't anything you can do or say that will make it any better.

So, please. If I tell you I'm tired, just accept it. Don't think it means I'm lazy or I'm looking for attention or any of those other stupid things that healthy people think when they're confronted with someone invisibly disabled. Because I wasn't always sick. I used to be as healthy as I looked. Which means I used to be just like you. Which means you could be just like me next week or next month or next year. And that's scary, I know. It's also the truth.

It's scary to realize that the life you had planned, you can't have. It's scary to realize you're going to have to depend on other people who aren't sick, because those people are likely to start thinking you're just lazy or faking or not really in as much pain as you say you are. Because well, you look fine! When people who look fine die every day, when they end up in the hospital every day, when their lives change dramatically every day. Because how a person looks is not indicative of their health.

Those people you see who look healthy but who have handicapped plates/tags? Leave them alone. Something is wrong with them that you cannot see. Those people who look healthy but who use motorized baskets in stores? Leave them alone. Something is wrong with them that you cannot see. That co-worker who looks healthy but whose always taking off to go to the doctor? Leave them alone. Something is wrong with them that you cannot see.

Those diseases you don't understand? They're real. They hurt. They wreck lives. Those illnesses that are chronic but non-fatal? They're real. They hurt. The wreck lives. Taking medication every day for the rest of your life? Real. Emotionally painful. Wrecking lives. Treating those of us suffering from them as though we were faking? Painful, shitty, jackassy thing to do.

It's hard enough living with the limitations these diseases impose. It's hard enough mourning the life we had planned. It's hard enough coming to terms with the strictures on our independence. Do you know how wounding it is to know that the only reason you've not been fired is because it's illegal to do so? That, despite a medical explaination from your doctor, your supervisors still believe you're just not trying hard enough? Or that you just don't want to work? Because you look fine. You look healthy.

We don't need the looks, the whispers, the "Well, if it was me, I would do. . ." Because the truth is, you wouldn't. Because you wouldn't be able to. You'd be too sick. Even though you looked perfectly healthy. How a person looks has nothing to do with their health.

And even if you don't believe me, even if you believe everyone who looks healthy must be healthy, have the decency to keep your uninformed, shitty ass opinion to yourself, okay?
posted by Zan at 7:44 PM


So, you're lazy, but your employers are sympathetic to the broad who keeps cranking out kids?

10:29 PM  

((((my dear zan))) Please check out: Ashwagandha--my customers with fibromyalgia report good results, with some noticeable increase in energy. :)

Love ya!

5:55 PM  

I, too, have fibromyalgia and people tell me the same thing: You don't look sick. I was hospitalized in Nov and a vistor of the patient next to me said to me, "You look like a healthy young lady. What are you here for?" I almost cursed her from head to toe, but the pain meds were so strong until all I could do was look at her.

Anyway, folk really don't believe how painful and insidious this disease is.

My manager, supervisor, and co-workers think I'm exaggerating or making things up when I say how much pain I'm in or how tired I am. But I don't give a fat rat's ass (yes, I'm a good Christian woman), and I still don't give a fat rat's ass what they think - that's why I'm a civil servant.

Thanks for letting me get that off my chest. Now my toes hurt (I'm not joking).

Take care of yourself.

8:27 PM  

This is the most eloquent blog about Lupus/Fibro that I've read lately. You rock.

I love your attitude

12:26 AM  

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