Ehlers Danlos Awareness Month

Hi all. It’s Veronica here, guest posting for Mum. Or more correctly, copy/pasting my  recent post into her blog so that this info is over here too.

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It’s EDS awareness month, which I am doubting is taken seriously enough in Australia. Goodness knows that doctors everywhere seem to be hideously undereducated about EDS.

We are not freaks. Not all of us can contort ourselves into a tiny little package, nor does ‘skin involvement’ necessarily mean that we can stretch our skin great amounts. My skin involvement is simply a bunch of stretchmarks showing up for no reason at all and getting worse, despite me not gaining any weight, the worst of them are at the back of my knees. I injure easily, take forever to heal and my scars stay purple for ages, before turning silver and widening/raising (there is a medical word here that I have forgotten). Also, you can generally find bruises all over me, even if I haven’t done anything to myself. My most recent ones were on the back of my hand (seriously, wtf?) and an orange sized one on the back of my calf. I’m also stretchy in my skin, but with everything else, it seems like nothing much. Sigh

Most of us don’t even realise we are different when our fingers bend back further and our elbows hyper-extend. I showed my brother a photo album of EDS photos the other day, only to have him reply ‘What’s so special about that? And that? And that one?’ Well nothing, IF YOU HAVE EDS. If you don’t, you’re left looking at the flexi people and thinking, ‘that looks like it hurts.’

I think one of the most common misconceptions about EDS is that our dislocations don’t hurt. Unfortunately, our dislocations DO hurt just as much as a sport/injury induced dislocation that you might have suffered. Even more unfortunately, our dislocations happen more easily and more often that normal people. It’s just the way it goes.

There is a huge range of abilities within the same EDS spectrum. Some people are only very mildly affected, while others may experience worse symptoms and be unable to do everyday things.

I suppose that it makes sense that I am having a crash* in the middle of EDS awareness month. What better way to make everyone aware than feeling like shit for a while? Not a very pleasant way, unfortunately.

Oh well. I do know that a bunch of Tasmanian doctors are getting a crash course in EDS management simply because of my diagnosis. Like BendyGirl said, if me getting a diagnosis helps just one other person going through what I’m going through, then it’s worth it. It sucks, but it sucks more to be told it’s all in your head.

Video via BendyGirl.

To find out more about EDS and HMS (Hypermobility Syndrome), you can visit here or here.

*A crash generally happens when I’ve been pushing myself too hard. Getting over one pre children used to leave me in bed for a week, just sleeping and resting. Post children is a slightly different matter, as bed rest is something hard to come by. I reckon this crash is just caused by 4+ months of sleepless nights catching up with me (late pregnancy is not conducive to sleeping through the night any more than having a newborn baby) and keeping the household running/fed/clean(ish).