When Nobody Believes You Have Fibromyalgia

Fibromyalgia is the disease that gets you coming and going.

Your symptoms—like relentless pain all over the body, sensitivity to light, fatigue, memory loss, and even things as embarrassing as bowel problems—are as invisible as they are miserable.

And they’re all compounded when those around you are convinced (with all the wisdom and authority of the MD they don’t have!) that it’s a made-up disease you just invented to get attention.

To the layperson it probably sounds like I’m exaggerating.

But an offhand Google search turns up dozens of articles by women (and even men) with fibromyalgia who are suffering the indignity of being called fakers and drama queens by those they love the most.

Husbands, children, friends, and even parents, according to commenters on the fibro message boards, add insult to injury.

Dealing with work is also a nightmare. Once you’ve burned through all your sick days, you can start saying goodbye to any vacation plans you might have had.

But what other choice do you have? Sometimes the searing pain is just too much to leave the house. When you’re out of vacation days too, the real misery begins.

And trying to explain this “invisible” disease to supervisors who have never heard of it is like explaining astrophysics to a parrot. How can you get people to understand what you’re going through?

It would help if we knew more about the disease. When you can only supply a list of symptoms rather than a root cause, it is easy indeed to say it’s all in your head.

But you can point people to the National Arthritis Foundation and the Centers for Disease Control: Both recognize fibro as a “not-in-your-head” disease,thank you ver y much!

We still aren’t sure what causes it, but a couple of hundred years ago we didn’t know that microbes caused the Black Plague. That didn’t keep it from killing people, unfortunately.

Many people have found that the best way to explain is through metaphors. Medical professionals use a light switch metaphor to explain it, which might come in handy:

It’s as though there’s a switch controlling your pain receptors that’s permanently set to “on.” (As you know, it’s more complicated than that, from brain fog to fatigue, but this is a helpful start.)

Less concretely, you could explain it as something ak in to the reverse of numbness: numb flesh can’t sense pain sources that are present; your flesh can’t stop sensing pain sources that aren’t there.

(Another excellent explanation would be “It’s none of your business,” which is tempting but not terribly effective at work!)

It’s very important to keep in mind that as you ask for compassion from your friends and loved ones, you need to offer them compassion in kind.

I know that might sound a little nuts , but hear me out: As scary as the onset of fibro is for you, at least you know what it feels like!

They’re grappling with this weird phenomenon that has taken a person they love and changed them. They may even feel it’s taken you away from them in some way.

If their confusion and fear manifests itself as being angry with you, it’s tempting to return anger for anger.

But remember: you can only help them understand if you understand them and yourself.

Educate yourself about your condition as thoroughly as you can, and then show them by example the same patience you wish they would extend to you.