I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Friday, 19 March 2010

Thinking and blogging.

I've been thinking a lot today, which spurred some very lengthy blogs over at my new group blog DARE

See, at the moment I'm doing what I can to raise dysautonomia awareness BUT I also have a separate facebook account which I use to talk about that stuff. Some might judge that as hypocritical, but I do have my reasons.

The main reason I chose to have a separate account is so that I can talk in depth about dysautonomia issues and share things with people on that account that I would not want to share with the 200+ people on my main account.

I know and understand my own reasons and stand by them, but I also have a questioning and inquiring mind (when it works right) and I did wonder to myself, isn't that slightly hypocritical- making a blog called DARE with the slogan "Daring to Raise Awareness", when I'm being quiet about dysautonomia amongst those 200 odd passing acquaintances from my school days?

Maybe it is, but it's my choice and I stick by it. The fact is, I just don't believe many people on that account would give a stuff and so I'd be wasting my time letting them see my writings about dysautonomia.

I'm not hiding the fact I have a health condition, it's not a secret, I'm just choosing not to talk about it in a certain arena. Much the same way that someone can be gay but choose not to go to parades and flaunt gay rights.

Another reason for my choice was the fact I'm not officially diagnosed yet. I have all the criteria for POTS including a heart rate increase of usually over 50bpm. But as it's not official, I can't yet say 'I have dysautonomia'. Even though I truly and deeply believe I do. People who HAVE dysautonomia already know how hard it is getting diagnosed so they will understand me and my struggle. Healthy people have looked at me with scorn for believing I have something that's not yet proven, and treated me as if I was crazy and delusional. So again, I choose not to talk about it. I can't MAKE them understand and it wastes my valuable energy trying to.

So, I chose to have another account on facebook where I could join groups and post my blogs about dysautonomia, sharing them amongst people who understand. Because that's what I want at this stage of my journey. To be understood. To be amongst those who understand, to help and support one another. And whether it makes me a hypocrite or not, the only people who truly do understand are the people who have dysautonomia or other chronic illness, and so those are the people who I share these things with.

As for the DARE blog- well, I am hoping that eventually people who don't have dysautonomia might take a look at it and might even enjoy following it. But to be honest, I don't hold much hope of that. Why? I'm not a pessimist- I just believe that people respond to what they can relate to. So, DARE might become popular amongst the dysautonomia community, but I can't really see 'healthy people' following it because I doubt they could relate. But the way I see it is, at least it gives us a voice, a presence. It shows that we are NOT taking this disease lying down. It shows that we are determined and that we will fight.

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