Posted by: Mary Bifaro ®
12/02/2005, 20:56:39
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Dear Kristan,Generally, when people ask if I'm sick because of my abductor SD voice, I inform them that I'm not. I briefly explain that I have a rare neurological voice disorder. Depending on the situation and my comfort level, I might offer them the NSDA trifold wallet card. It is true that many people still say that they hope that I feel better even after explaining that I'm not sick. In most of those cases, I just thank them for their concern. Sincerely, Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: LauraH ®
12/03/2005, 15:22:18
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Hi Kristan,I usually just tell people that I have a vocal cord disorder, and that I wish I were sick, b/c then it would get better. If the person is truly interested, they'll ask follow-up questions, and depending on your level of comfort, you can then explain SD to them. I've found that most people are curious, and want more information, which I'm always willing to give. The more people become aware of SD, the better for those of us who are afflicted with it. It'll be interesting to hear how others handle this very common question. Thanks for asking it! Laura
ADSD/PA
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Posted by: snowie ®
12/03/2005, 18:05:24
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Hi Kristan,People are always asking me if I'm sick, they say , 'awwww you sound as though you have a bad cold, or do you have laryngitis',
or they assume I'm deaf and speak very slowly to me. I had to say to some one the other day, don't worry I'm not deaf I just have a problem with my voice. It was weird because I had been doing really well, and had thought my botox injection had been sucessful, and suddenly I just couldn't get the words out, and since then my voice hasn't been quite so good. So when people ask me if I'm sick or look a bit strangley at me when I speak, I just say, I have a problem with my voice that effects my vocal cords. And if they are interested I tell them a bit more. I used to say I have a neurological disorder but that seemed to worry people!. I have a job where people need to feel that they have complete confidence in me and for some reason they didn't respond well to me saying I have a neurological disorder (maybe they thought I was seriously sick and would keel over or some thing!) ... so now I try to keep it as simple as possible and just tell them a little more, alittle at a time, if they seem genuinely interested. Funnily enough people do say, 'I hope you get better soon' ... even when I've told them this. Some times I just say 'thanks' (and groan inwardly) or I say well, actually there isn't a cure but it can be treated. I have found that being upfront when I meet people for the first time, and just saying 'look I have this problem with my voice, if you can't hear me, or I don't say some thing clearly please just ask me to repeat myself', and that seems to really help. I guess it takes away the element of confusion for people when they can't figure out whats wrong with you. I know it can be miserable to have people asking you if you are sick all the time, especially when you think you are having a good day ... but I keep telling myself I guess it could be worse hey ... Take care, Snowie
AB SD, London, UK
Modified by snowie at Sat, Dec 03, 2005, 18:11:15
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Posted by: kim ®
12/03/2005, 22:49:22
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Hi Kristan,The same thing happens to me too. And, as well, on days when I think my voice is not so bad, how frustrating! Also when I tell them I'm not sick, that I have a problem with my vocal cords, they still say, at the end of the phone call, I hope you get to feeling better... eeee gads. I say thank you. I feel like saying, "I did feel fine but you made me feel awful", but they don't understand and I work at a doctors office, so that would not not be good at all. I wish I knew something more helpful to say. I'm glad you asked this question and look forward to hearing others responses as well. But, I can definately relate to how you feel. Best Wishes, Kim/ABSD Houston
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Posted by: jkmi ®
12/04/2005, 08:53:31
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I have had the same experiences over my twenty years with SD.
I just briefly state I have a chronic problem with my voice and that I am not sick. Usually that is all that is required. I don't get mad or upset because SD is not a well know illness
and it is commonly mistaken for laryngitis (the kind you get with a cold).
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Posted by: Emily Lim ®
12/15/2005, 00:30:39
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Hi KristanI think this must be the most commonly asked question. In the past, I used to get pretty upset & irritated since we must have all heard it 101 times. But these days, I've come up with a few standard responses, depending on the occasion, which I find helps. If it is a passing encounter and my voice is really bad that day, I just say yes and leave it as that. If there is a genuine interest, I explain I have a voice condition etc. And if these are people I may see again or expect to interact with again, I explain more and usually throw in some humour. I find this helps break the ice a lot, relaxes me (and the other party) and my voice ends up coming out much better. I find that when I am fearful to speak, that comes across and people actually get uncomfortable. But when you get it out in the open, then people are also more open and less wary of how to react to you. My husband signed me up for a church bible study group a couple of years back and I was terrified because I had to speak in the group of 10-15 strangers who generally warmed up to each other quickly but not to me (the group changes every year). This year when the new group came together, I made it a point during the introductions just to explain my voice upfront - it made a huge difference because you get past the questioning stares and awkardness for others and I found I made friends so much more easily that way. There will of course be the occasional hecklers and insensitive people, and I've learned to just discount their responses as people who need help more than I do! Hope that helps.
Emily Lim
AB-AD, Singapore
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Posted by: Marilee ®
12/15/2005, 12:18:57
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Emily, I enjoyed your reply. I haven't noticed any
posts from you before, but glad you added your
thoughts now. How nice to have you all the way
from Singapore! Keep them coming, please.I agree with most of you all, that we have to
just be patient with people and try to help educate
as many as are interested. I liked your last comment,
"if people are insensitive, they need help more than
we do!" How nice that WE can get help from each
other on these b.b.'s. Hope to hear from you more. Too bad this thread is on
page 2 now, because some might miss it, if they are
just looking for new posts on page 1. Best wishes to all of you! I empathize completely!
Marilee (Indiana, U.S.) adSD, CD, Meige's, 5 yrs.
gcazz@juno.com
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Posted by: Emily Lim ®
12/20/2005, 01:20:04
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Hi MarileeThanks for your post! I contributed previously as bensems a couple of times about a year back but a lot of things has happened for me over the past year - work/personal so I didn't visit the board so much. I was one of those who unfortunately did not know of the bulletin board till quite late. My first 5 years of AB-sd was very "lonely" as I must be the only person in Singapore with Ab-sd and of course no one knows what on earth it is! And after being asked "Are you sick" about 201 times, you start devising model answers for different weathers! It also took me a while to reply after I started reading the board, partly maybe because I wasn't so used to the "bulletin board" concept and general bad press about chatrooms! But I can see how at any one time, I have experienced the exact same situations as everyone else here and can totally empathise! It's actually taken me more than 5 years to come to terms with my voice and be able to joke about it and - would have been much faster if I had known of this BB much earlier cause I thought it was just me being manic-depressive! I'm taking a hiatus from worklife this year just to enjoy some of my pursuits and also just volunteered as area contact person for South East Asia so I will certainly be contributing to the BB more often! Emily Lim AB-SD, 7 years & counting
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