The month of May is EDS awareness month, so I couldn’t very well let it go by without making a post about it considering I live with the disability every day. But, it is one of those genetic conditions that many people have never heard of or don’t really understand. And who could blame them. It’s complex and can cause many, or few problems.
Here’s the rub in using social media. It is a great tool. It’s good for connecting with like-minded people and chatting about shared interests. It’s also a good tool if you want to set it up as a vehicle for raising awareness for a specific cause, for instance the EDSUK Twitter account. But – if you’re not using a cause awareness account where people choose to follow you, then social media is a minefield when it comes to how much to say about your day or your illness at any given time. People don’t want to be sucked into despairing tweets or Facebook status updates, they want photographs of cats and dogs, cake and comedy out-takes.
So, because it’s EDS awareness month, here’s what I don’t tend to say on social media, but will share today;
Monday morning I tweeted;
Morning. Up and out with Alfie and it’s lovely this morning. pic.twitter.com/BF7B50WemC
What I didn’t say was that prior to leaving the house with Alfie that morning, I’d had to take between 6-8 tablets just to get me up, out and functioning. These were to cope with low blood pressure and pain relief just on waking among other things.
Bank holiday Monday I tweeted;
The BBQ is lit and wine flowing. Friends and family round. It’s a bank holiday 🙂
What I didn’t say was that I knew such a long day prepping food and then drinking alcohol would take me at least a couple of days to get over with the fatigue alone, but that I won’t give up my life completely to do things like this. I will just put up with the consequences.
I don’t want to change the way I tweet or Facebook. I don’t want to write my woes publicly on a daily basis. I live my life and get on with it the best way that I can and I enjoy it most of the time. But, I do live with Ehlers Danlos Syndrome and it can be difficult. It slows me down. It makes me tired. What it won’t do is take everything. I can write and I can do it at my pace throughout the day. I am one of the lucky ones however. Some people suffer a lot worse than I do with it. EDS is a persons connective tissue, it’s our building blocks and it’s not being made by our body in the right way.
The month of May is Ehlers Danlos Syndrome awareness month. Maybe this month you can be aware of what your friends with any disability aren’t saying. It can be quite telling if you know what to look for…