Monday, May 10, 2010

A Story in 140s: Persons Living with Fibromyalgia (PWFs)

The Twitter fail whale error message.Image via Wikipedia

Inspired by a comment from my friend Mo, here is a story about connecting with others through Twitter:

In college I had a bulletin board on my dorm room door. I often posted short poems on my door for passersby to read. I also had a white board for people to leave me messages. I really enjoyed coming back to my room to see all the random messages, poems and quotes my neighbors left on my door.

Yeah, I went to college in the dark ages, before texting, IMing, e-mail, Facebook or Twitter. I guess that makes me a dinosaur...

Luckily I have a fondness for technology and have been an early adopter of new and novel ways to communicate. That includes joining Facebook, writing a blog and tweeting. I am plugged in and unabashedly plugging myself using social media.

Wondering what in the world I do on Twitter?

Well, I recently plugged into a community of persons living with fibromyalgia and other chronic illnesses on Twitter. Each time I found a fellow ChronicBabe, I hit their follow button and added them to my list. Now I am starting to have conversations with them about the issues we collectively face each day. Granted, the conversations take on a relaxed and leisurely pace, can last for days and sometimes do not have an obvious start or conclusion. But on Twitter, there isn't the pressure to respond right away, or even at all, if you don't want to or aren't up to it.

With only 140 characters allowed per tweet, it's short, sweet and to the point.

Wondering how you have a conversation on Twitter? Here is a recent example:

My friend to the Twitterverse: People with fibromyalgia called: #fibromites, #spoonies or #fibromyalgiacs Are any of those terms respectful? #fibro my friendYou make a very good point. I've learned some of the nicknames from #fibro sites. Perhaps it's sending the wrong message...
My friend replies to me: @selenamki yeah the nicknames are something to think about...

My friend to the Twitterverse: My prob w fibro names explained! RT @Disabilitygov: Imagine referring to your friend as "the cancerous woman." http://bit.ly/cbdRk2 #Fibro

I reply to
my friend: I like the terminology 'person living with___' as in 'I am a person living with fibromyalgia."

My friend replies to me: @selenamki that's a mouthful, but feels better. I am NOT my disease. I just saddled myself with the moniker. I crack myself up. Sort of.

I reply to my friend: It's a mouthful, but much more empowering. Persons living with AIDS abbreviate it to PWA. So we could use PWF...

My friend replies to me: @selenamki we could start our own trend #PWF YES!!! I didn't know people with AIDS called themselves anything but people w/AIDS. Go figure.

My friend to the Twitterverse:
#PWF=People with #Fibromyalgia instead of #fibromites What do you think? #fibro
i K, better than 'I have fibro' #PWF=People with #Fibromyalgia instead of #fibromites What do you think? #fibro
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kathy said...

Ah, ha I cleared my cache and it worked, thanks! Yes I think PWF beats the heck out of fibromite. And I'm fine with you posting my name on your blog :-)

I like Twitter but I had a little incident last night. Whew! Do NOT ask people not to tweet the ending of a tv show. My bad.


Anonymous said...

Oh Selena!!!! I still don't get twitter! But, that's OK because I would just be on the computer ALL DAY!