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Personally I tend to say 'I have some muscle weakness in my legs', and people generally seem satisfied with that. I sometimes add, 'It's a very rare genetic thing'. I don't like to shock or worry people unnecessarily, I think sometimes when people hear about or see something bad happening to someone else, it can make them feel guilty and uncomfortable for being 'ok/normal' and for not knowing how to react (which is quite understandable given it's an unusual situation for them). I don't think it's fair or helpful to make people feel like that unnecessarily, it's not their fault they're ok and they may well have other things going on which are also challenging in different ways! If people ask for more information, I will say something like, 'yeah, it might get worse but I'm not really sure as it's a rare thing so not much is known about it'. I try and talk about it in an open, honest and relaxed way to show that I'm ok with it (which I am most of the time - though I have my moments!) and that generally seems to put people at ease.
One thing I have been concerned about (as a single woman) is how potential partners would view the disorder. Having noticeably thin calves (one thinner than the other) and the possibility of getting 'worse', I have not felt like a 'good catch'. It is very kind of people to say things like 'a good guy won't be put off by something like that', but realistically, this disorder is part of the 'me' package and a guy would have to be ok with that. I guess I had been thinking 'why would a guy want me when they could have a 'non-defective' partner'! However, I have been extremely surprised recently about how little guys seem to be bothered by any of the above. It seems that if I'm confident and open about my self consciousness (if that makes sense) and not ashamed of it, a good proportion of guys seem to respect that 'stregth of character' and find it quite attractive! I guess when I look around me at the huge range of people out there, all with their own unique 'flaws' (emotional and physical vulnerabilities), I recon I'm not too bad a 'catch' at all for the right guy!!
I should probably add that I have Myoshi type which doesn't seemed to have affected me too badly yet; everyone's situation is different and everyone of course has to find their own way of thinking and talking about their situation as with anything. I would be extremely interested to hear more about other peoples thoughts on this.
Best wishes all,
Bex
On Tue, Apr 21, 2009 at 4:28 AM, patty martinez <pattymartinez1980@...> wrote:
Hi in response to the posts I have just come to realize very quickly how nosey and mean some people can be,but then I have learned that it is maybe because of their lack of knowledge or compassion. For the most part I just say that it is a muscle disorder in which my muscles are slowly deteriorating. I always try to end on a high note and say but God is good and I just keep praying and believing that one day soon he will heal me.
--- On Mon, 4/20/09, Louise Needham <louiseneedham@...> wrote:
From: Louise Needham <louiseneedham@...>
Subject: RE: [dysferlin] What do you say when someone asks....
To: dysferlin@yahoogroups.com
Date: Monday, April 20, 2009, 1:54 PM
When people ask about my mum I say 'it's a muscle-wasting disease', but it depends who they are because some people are really curious and want you to explain more. Some people just stroll up to my mum in the street and ask if she has MS! I guess because that's a well-known condition.To: dysferlin@yahoogrou ps.com
From: mmejia_28@yahoo. com
Date: Mon, 20 Apr 2009 10:20:03 -0700
Subject: Re: [dysferlin] What do you say when someone asks....
Hi Donna,
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
To: dysferlin@yahoogrou ps.com
From: DeejLouise <deejlouise@yahoo. com>
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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