Saturday, March 14, 2009

What The Heck Is a Spoonie?

Posted on/at 2:43 PM by The Goddess

My little brother asked me that question after following my Twitter tweets for a while. How could I have not mentioned that?

The explanation is simple. Both lupus and fibromyalgia affect the brain, and I've evolved into a total space case.

The spoon theory of lupus was authored by the lovely Christine Miserandino of But You Don't Look Sick. It got shortened to spoonie, and many spoonies on Twitter end tweets with #spoonie to make it a searchable term on Twitter Search.

So what's a spoonie? It's someone who has an invisible illness, such as lupus and fibromyalgia (those are just personal examples... there are many invisible illnesses). We look just like anyone else. That makes it difficult for "normals" to understand why we need accommodations. Although we look perfectly healthy, we may need to use a wheelchair, a handicapped parking spot, a cane, or other tools. We may be too exhausted to keep up with standard social conventions. We may have difficulty with memory, with speaking, with being able to perform efficiently at work sometimes. We may need to rely on government assistance, being unable to work at all.

You can't tell these things by looking at us. You may wonder why you see me walk into the grocery store on my own feet, and then grab one of the scooters. You might get impatient if we give you a blank look when you talk to us. We may strike you as unintelligent or lazy. We are not. We want to work. We want to be able to play with our kids. We want to walk without assistance, go out to the movies, return your calls promptly, and remember why we put the TV remote in the fridge. We simply cannot.

We did not ask for this any more than someone struck with polio or cancer asked for it. We are not lacking in moral fiber. This is not a personality defect. We are, in fact, ill, even if we do not look sick. There are many more of us out there than you would believe. Most of us want our privacy about our health, the same as you. We are not always forthcoming about how much pain we are in, how weak we feel, how hard our daily lives are. We may make light of our disability, but that does not make it less real.

OK... much later. I had to take some deep breaths. I was getting a bit emotional.

I've had a couple of total strangers give me personal advice. Very serious personal advice, like "leave your husband because he said XYZ to you", and "accepting that there's no cure for lupus/fibromyalgia means you're giving up on life". I know these people most likely mean well, and they didn't intend to insult me. Goodness knows my own smart-ass remarks can be taken the wrong way.

I know that I appear to be an open book, but like anyone else, I don't tell the whole story online, ever. I do not believe anyone does. I protect the privacy of my family. Also, my writing is, of course, only one side of the story. I may make a comment that Mr. Fulano acted like an ass, but I can't read his mind. I'm sure he thought the same of me.

My photos don't show how dirty my house is. I don't post pictures of myself looking really, really sick. I'm human, and I have feelings, fears, and other messy emotions. I deal with them by using humor, sarcastic wit and stoicism, but that's not the whole picture.

Feel free to debate with me, but keep it light, keep it courteous, and for heaven's sakes, use your emoticons. I invented them for a reason. If you get to butting heads with me in earnest, I may charge you with being the village idiot. Hmmm..."Idiot of Frog Hollow". That kind of has a ring to it. I may have to change my title.

Enjoy life. Don't worry about me. I'm alive and doing fine.

Wow, did I get off topic, or what? That's a spoonie for you. I wish I could blame it on the drugs, but I'm not on any anymore.


NickBambridge said...

Thank you for explaining this! I've wondered for ages what #spoonie means.

K.B. said...

I just found you after looking for hashtags to tweet, for an article I wrote yesterday, about having an "invisible illness". I am so glad to have found you, the tag, and the "spoonie" community! I have Cystic Fibrosis, by the way.

I'll be sure to come back and spend some time here!!

All my best,

Gianna said...

came looking to understand the term spoonie! my posts get shared with that tag all the time...and yeah, lo and behold, I'm a spoonie too...also drug free now :-)

nice to meet you.

Andrea Hayes said...

I also wondered what #spoonie is only to realize it's ME! haha- not sure if I should blame the fibro fog or my inability to read tweets. Thanks for the blog, I love your writing :)

Anonymous said...

Hi ...fibro friend lol ....havin a masdive flare up right now sooo started searching for more answers AGAIN!! Busy working mum with a Mini zoo in desperate need for tips on coping .

sadie6229 said...

I wish people understood how I feel. This article explains my situation as tion perfectly. It's not easy being in pain. I'm always tired. I wish I could get help but I can't afford it. I'm gonna start hashtagging spoonie from now on. Thanks for explaining everything perfectly.

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