“You’re on twitter all the time, you can’t really be sick”
Thankfully that attitude isn’t something I’ve experienced first hand but I know that it goes on and is a way that some people think.
But for me, twitter has been enormously helpful.
The people: There is a friendly, helpful community of people who have EDS meaning they understand what the condition is, what you’re experiencing and some of the hurdles that come with it.
The advice: On many an occasion I have needed to adapt things or find new ways of doing something and a quick tweet gets a number of replies. Ranging from advice about which jar opener to go for to creative thinking about how to get around pulling tights/leggings/trousers down when you go to the loo (the answer btw, is sock dreams. or more specifically, super long socks combined with a short, flippy, lightweight skirt)
The company: There are days and days where I find myself unable to do anything or leave the house and twitter is a really good way for helping me feel less isolated.
The information: Information about EDS is patchy. And repetitive. And unreliable. So following people like HMSA and EDSUK as well as other people with EDS means you get to find out things you wouldn’t otherwise.
The ranting: Living alone, having somewhere to rant is a good thing otherwise I think my carers would suffer. Although actually, a fair amount of my ranting is about my carers… But it helps when other people know what it’s like or can suggest ways to make it better.
The friends: There are people I wouldn’t know without twitter, people I consider to be incredibly close friends. And it’s a way to keep up to date with what friends you don’t get to see much of are up to.
Do you use social media? Has it been helpful to you?
I’m @theowlgirl on twitter, you’ll find I’m non public but I accept most follower requests. I just had a weird patch where people not on twitter were talking to me about stuff I had only put on twitter.. weird!