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To: dysferlin@yahoogroups.com
From: mmejia_28@...
Date: Mon, 20 Apr 2009 10:20:03 -0700
Subject: Re: [dysferlin] What do you say when someone asks....
I was just reading your posts about how to tell a curious person without going into details etc. This is funny because for me, i start to feel like i am rambling on and on, that i feel to fully explain this to someone, i have to start with the beginning to when i got diagnosed and as soon as i'm done, its like i've said too much. Usually if its someone in the street i dont really want to spend too much time talking with, i'll just say i hurt it because thats just what usually people assume to be the case. Usually on good days i look like i am 'normal'... when i'm walking i dont limp or anything but as soon as i see stairs i immediately look for an alternative because, depending on how steep the steps are and how many steps there are, i end up literally climbing with the handle of the stairs as my rope. And since i am a couple pounds overweight(abt 20), i feel like people just assume its because of that and look at me like i've had one too many burgers :) If anyone has a better way of communicating this to others, i would like to hear it too please, thanks!
Miriam
From: DeejLouise <deejlouise@yahoo.
To: dysferlin@yahoogrou
Sent: Sunday, April 19, 2009 7:24:59 PM
Subject: [dysferlin] What do you say when someone asks....
Just out of curiosity, what do you tell people when they ask questions? I know responses differ depending on how well you know the person asking the questions. I have no qualms telling it like it is, but can tell some people are shocked and aren't quite sure how to respond. For instance my symptoms are fairly mild and I walk with a slight limp. Several people have asked me if I hurt my foot, or leg. Some of them are co-workers and others are strangers who are just curious or trying to make conversation. They don't know what to say to me when I tell them flat out what is causing my limp.
Does anyone have a funny story or comment that doesn't make others uncomfortable? I'm not concerned with how my friends and family react, but don't necessarly want to give a long explanation to strangers but at the same time I want others to be aware of this type of disorder.
Donna
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