It wasn’t until I realized that my RA was for real that I sought out virtual support. I was scared, worried, and a whole bunch of other unhappy emotions and I knew I needed to reach out.
I started with Facebook, I joined the odd RA group here and there. I picked groups that were closed so if I did decide to post something my FB friends would not know. I did that for about a year. They helped a little but I needed more.
I decided to try Twitter. People seemed to like it. But I wanted to be anonymous yet my true self.
I pondered a long time about what to call myself. Then ‘out of the blue’ it came to me. I will be known as “The Elephant in the Rheum”. It explained how I was feeling. My RA is there, in all its glory, yet no one is talking about it (including me). So I would be known as @ElephantRheum.
I had to Google how to use Twitter since I had NO idea. I had to learn about hashtags, retweets, favorites and all about those #FF (follow Fridays). Plus the multitude of short forms needed to make those tweets fit into 140 characters.
My first follower was @HurtBlogger (also known as Britt Johnson). I followed back, Twitter etiquette said I should. I’m sure glad I did. I’ve since learned she’s an amazing advocate for patients and doing it all while living with a chronic illness. Awesome!
So, one by one I found new people, like me, to connect with (plus the odd spammer too!). I was forming a community!
I started looking more closely at the people that were part of this new Twitter community. That’s when I started to notice the hashtag #Spoonie. It was usually listed after ones I could figure out like #RA, #Lupus, #Fibro etc. I just figured it was a rare or new disease and moved on (rare and new but somehow EVERYONE had it?!?). Then I started to notice it in people’s tweets. Spoonie this, Spoonie that. It was popping out of the page EVERYWHERE.
It started to bother me. I had to know! If I’m going to follow the lives of people with ‘Spoonie’, I’d better figure out what it is. So I Googled it.
I was SO wrong. It was not one disease, it’s not even A disease. It’s a metaphor for those living with chronic illness that are given a limited set of spoons each day to complete their daily activities. A pseudo-energy currency. Ohhh I get it! A Spoonie is someone that lives by Spoon Theory.
It was in that instant I realized that I was in fact a SPOONIE! It was all starting to make sense.
I stumbled across, #spooniechat, led by Dawn M. Gibson (@DawnMGibson). For a couple hours each week you can connect with your fellow Spoonies. You can help and support others who are having a bad week or just air your dirty laundry (always a hot topic! Haha – literally I mean actual laundry – check out #spooniechat for yourself to find out what I mean).
I learned to love live tweetchats. Engaging in real time! Not post something, and wait and wait until someone says something back to you, if they ever do at all.
I have since learned there are other awesome tweetchats. Lurk, participate, it doesn’t matter as long as you are respectful. My favs are #MedX, #hcdlr, #hcsm just to name a few. You just say what’s on your mind and go from there.
Another thing I learned is that many Spoonies have their own blogs. They use the power of the written word to express how their chronic illness affects them. I pondered for a long time about starting my own. It was @abrewi3010 (Alan Brewington) that urged me to just go for it. Thanks Alan, I did.
I have learned that being a Spoonie, isn’t a bad thing, it’s just a reality. And with it comes the opportunity to band with others, to share, to connect, to heal.
So many Spoonies I now think of as my virtual family.
Being a Spoonie wasn’t my choice, my stupid immune system decided that for me. But being a Spoonie means I am automatically entered into the Spoonie Club which makes being chronically ill a wee bit better.