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nejsen


Member

Posted Sat May 12th, 2012 8:57pm Post subject: Rare illnesses and the psycological damage they do.

Lets hit the nail on the head. I have a rare handicap called Duanes Retraction Syndrome, which means that i cant move my left eye to the left because the eye nerves are not attached corretly, so my eye retracts when i look to the right side. When people asks me if i'm crosseyed, which i am not, and i explane it to them that it is a rare handicap, they don't always understand how big a nuisance it is, cause when i sit so i have to look to the left i get a headake within 5 minuts. And that isn't a very good thing.
My point with all of this is A: Because i need to vent, and B: I would like to hear other peoples stories so i can learn to deal with more easily than i am now, so if you have a rare illness or know someone whp has, please use this wonderful place called the WWW to vent.
Thank you in advance for sharing.


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Vinchy


Member

Posted Fri Jun 1st, 2012 11:00pm Post subject: Rare illnesses and the psycological damage they do.

Some people don't have legs from birth...or blind. Some of them give up for lost. Some - do different interesting things during their lifes. And the different is that the "first category" of people think "I'm ill"!!!! But the "second category" think so: "I have too many things to do and have no time to think about my illness" - and they often become very successful and strong.
If somebody asks you - "Are you cross-eyed?!", you can smile. And answer something they don't expect. For example- "This is a very interesting question"!


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pinkfluffyness


Member

Posted Mon Aug 27th, 2012 7:38pm Post subject: Rare illnesses and the psycological damage they do.

I get odd looks and questions having myoclonus dystonia syndrome most annoying is that even friends and family don't fully understand and can react to me differently than they do others, so I understand the need to vent!
To those who think they are the first to spot you are different to them, first be glad you are different from them , answer questions openly and simply (they need simple), so "are you cross-eyed" response "no".
Another tip is to see yourself as taller, greater and more powerful than anyone who confronts you, to use a phrase I have on the dystonia forum "use the force" - nobody messes with a Jedi


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nejsen


Member

Posted Wed Sep 12th, 2012 4:52pm Post subject: Rare illnesses and the psycological damage they do.

To both of you. You are very right, very right indeed. Mr./Ms. pinkfluffyness, most people do need short answers, i have learnt that the hard way. And thank you for the Jedi-thing, i'll use that After a long time of feeling like i was under others i now use my weaknesses as strenghths, and what both of you have said was probably the push i needed. Vinchy, i was most deffently in category 1 when i got the diagnosis, but now i hope i am more in category 2.
I know a man who has dystonia syndrome and he is one of the smartest people i know. It is funny to see peoples faces when they see my friend or my eye for the first time. Most people are scared of illnesses like dystonia or other handicaps, don't they realise that in most cases it isn't contages To all: Handicaps aren't a weakness it's a power!
If you are handicaped, do as pinkfluffyness: Be a Jedi!


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