Friday, 17 June 2011
How many more times!
How many more times!
Now, I'm a pretty patient person for the most part. It takes a fair bit for someone to push my buttons - I have my father to thank for that, since I take after him, and not my mother, who my sister is like.
But - I find it so difficult to not get mad when someone asks about my disease, and I say "I have rheumatoid arthritis." to then get the reply, "Oh, I've got arthritis in...." and they proceed to talk about osteoarthritis they have.
Don't get me wrong, I know osteoarthritis can be debilitating in its own way and painful. Believe me, I also have osteoarthritis - so I know how that can be.
But you try and explain that your disease is nothing like, and you can see the shutters rolling down across the eyes before you've even got as far as "But......."
Now, for those who don't like swearing, stop reading now.........
For fucks sake - at least have the decency to listen! It isn't a fucking great competition to see who has the worse disease. Believe me when I say I'd give mine away in a heartbeat.
I see when someone has MS, Parkinsons, Huntingtons, Cancer and other diseases to name just a few. People recognize and understand the difficulties often faced by someone with those disorders. And yet, RA remains such a mystery to most. I've had personal experience with friends and family who had all of the above - My own family in particular has faced Parkinsons on three occasions. One grandmother, my uncle, and his brother - my father - who died last year from complications partly due to his Parkinsons.
Personally, I would rather RA was given a name that completely removed its association with arthritis, at least for the public conception. Its first and foremost an auto immune disease. It means my body is, for whatever reason, attacking itself. This isn't just limited to joints.
Perhaps the only way we can fully educate is to get rid of the misconception, and the first step would be, at least I believe, to remove a name that automatically gives that. No, I have no real idea what to call it, but I'm sure there would be enough of us to throw some ideas in to the ring, brain storm it, and come out with something far better than we have now.
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