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…
diannegray says
Very well said, Rebecca xxx
Tweeted this 😀
helenmackinven says
I admire your positive attitude Rebecca!
Alex J. Cavanaugh says
You have a great attitude! You can either be miserable or live with joy. Which sounds more fun?
Margot Kinberg says
Rebecca – People really don’t always realise just how much is behind simple things like going outside with the dog or having dinner with friends. I admire the way you are determined to triumph rather than allow yourself to wallow. And you know what? If you need a few days’ rest after doing something, we’ll like you at least as much then too.
nancyrae4 says
You’re a great role model for all of us living with disabilities! Thank you so much!
Jacqui Murray says
That was a fascinating peek. I understand and am very much the same (especially doing whatever is required to get the body moving every morning–love those pain pills some days). I do find the less I talk about it, the better I feel. Every time my doctors try to send me to Yet Another Specialist, i try to explain that. They don’t seem to get it.
D.A.Cairns says
You are so right about what people want on social media. I admire the way you handle yourself. Good on you.
Carol Balawyder says
Thank you, Rebecca, for making me aware of EDS and of your having to deal with the syndrome. You are very brave and your attitude is admirable. 🙂
Irish writer Mel Healy says
Bravo, Rebecca. You’ve certainly raised my awareness of EDS in a meaningful way in an everyday context.
– Mel
MarinaSofia says
Hear, hear! Well done, Rebecca, for being brave and honest to talk about it – and to move on in spite of it all… at your pace.
Kate says
Reblogged this on Some of my favourite posts and commented:
Another wonderful post from Rebecca on living with debilitating illness. People see me chatting with friends for a couple of hours and won’t see any difference from a ‘normal’ person, not realising I’ve rested all day to manage going out, probably been in tears getting ready, had to think about how far I have to walk from the car to see if it’s manageable at all, and had to plan a quiet day following it. Thank you again Rebecca for raising things I never find a way to say x
chrisb-jwordsandimages says
Good for you Rebecca, you just get on with life. I’ve not met anyone with your illness, but I have seen it on the television, so am aware of it and just hope people are understanding when your life is limited by it. x
rolandclarke says
Glad to read this as tend to confine my comments about my Multiple Sclerosis to those groups that know I suffer with it. Always feels better to be positive in what I focus on.