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Posted by: Kay B ® 01/22/2003, 14:49:01 Author Profile Mail author |
I have had SD for a few years and have had several botox treatments. One of the aspects that I find most disturbing is a feeling that people judge my mental, emotional and physical capabilities by my voice. This is especially true when using the phone. So many times people will ask if they are calling at a bad time. I even had a salesman call me back just to make sure that I was Ok. I think people judge my emotional state thinking that I am extremely stressed or upset. Although stress certainly makes my SD worse it is not the cause of the problem. I also have an autoimmune disorder--reactive arthritis. It is not connected to the SD although often people (even doctors) often assume that it is. Although I do have mobility problems, people often think that I sound disabled before they have even met me. Sometimes it is as if people stop listening to me because my voice sounds unpleasant. This is frustrating because I feel that I have something to offer in a converstation. My last botox treatment was not effective. I get a very small dose because I'm extremely sensitive to its effects. This last time, however, I did not even go through the usual period of breathiness that one can expect. I guess my wish would be for people to listen to the message and not the difficulty in presentation. Thanks for allowing me to vent! Kay |
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Posted by: sarah bayle ® 01/22/2003, 20:49:55 Author Profile Mail author |
Kay, I love how you said what you just said. I feel exactly as you do. I get frustrated when people think that they can judge my moods by my voice. And I love when I meet people, on rare occassions, who know how to just hear me. It is a beautiful face that it patient while I speak, that hears what I say for the meaning, and not the delivery, and who doesn't spend a whole bunch of time trying to figure out why I sound like I am drowning, stuttering, sputtering, or crying. I just sound different and I like to be listened to! But, I love how you said it and I had to second your thoughts.... Sarah Bayle |
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Posted by: Kathy Pellette ® 01/22/2003, 23:22:01 Author Profile Mail author |
HELLO! DYSTONIA NO MATTER WHERE IT IS, IS A HORRIFIC THING TO HAVE. I AM GLAD THAT THERE ARE OTHERS WHO DO LISTEN AND SURELY DO CARE ABOUT HOW WE FEEL. PEOPLE, DRS. EVEN, JUST HAVE LITTLE INFO ABOUT IF ANY ABOUT IT AND I CAN SURELY SEE HOW IT MUST MAKE YOU FEEL HURT BECAUSE THEY STOP LISTENING AND IGNORE YOU. SOUNDS MUCH LIKE WHEN SOMEONE'S BLIND AND PEOPLE TALK AS IF HE OR SHE ISN'T THERE. PEOPLE ARE VERY INSENSITIVE. I KNOW THAT BOTOX DOESN'T WORK FOR EVERYONE. I ALSO KNOW TOO THAT RESULTS CAN VARY FROM ONE SET OF SHOTS TO ANOTHER. THE SHOTS MAY STILL WORK SOME FOR YOU..MY NECK WAS REALLY BAD OFF AND IT TOOK ABOUT A YR. BEFORE IT GOT WHERE I FELT I HAD A NORMAL NECK. aNYWAY, HOPE SOMETHING WORKS FOR YOU SOON! |
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Posted by: mary bifaro ® 01/23/2003, 10:08:22 Author Profile Mail author |
Dear Kay, We in the SD community understand your frustration in feeling judged by your voice. Staying connected with the SD community helps us realize that we are not alone. We all go through times where it is easier to isolate ourselves and withdraw socially. It is important, however, to realize that how our voice sounds is only a small part of who we are. Maintain your spirit and do your best. We can teach many people about the SD condition and how we cope with it. Sincerely, Mary Bifaro, AB SD since 1987 |
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Posted by: Doris St. Clair ® 01/24/2003, 11:53:17 Author Profile Mail author |
Hi everyone, I got a phone call from a friend the other night. The last time I spoke to her on the phone it was after a botox shot and I was able to carry on a conversation with her, however, at this stage of my life, my botox hasn't been working for the last several times so it is very difficult to understand me. I can say a few words fine and of course you all know how difficult it is to just get those few words out. Anyhow, we had a terrible time on the phone because everything I would say, she would say she couldn't understand me. Years ago we could talk on the phone forever. I did get her to understand that the botox hadn't been working and she asked "oh, does that mean you will have to spend the rest of your life talking that way?" After I hung up I started to feel bad and sorry for myself. But that passed as it always does, (thank goodness). I told myself that that was just her way of saying that she missed our great conversations on the phone. I wish she would just get a computer so that we could talk via email!!lol. Doris St. Clair AD/SD VA |
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Posted by: Jean C. phelps ® 01/24/2003, 15:20:47 Author Profile Mail author |
Doris, first of all where are you located in Virginia? I have not had Botox injections, I do not feel that it would wise with other things that are going with my health. But I wanted to say AMEN to everyone's comments. We have been in the process of refinancing and the loan guy will not talk to me, he will call when he thinks Paul is home and ask to speak with him... We have had people, not talk to me that turn an talk with Paul, then they go on to talk as if I was a third person not there, how rude. I do get the same comments from people as you mentioned either in person or on the phone that say, "oh are you okay" but I have found that with sales people it is easier to get rid of them because they think you are sick, think of it, that could be a blessing.. but what a price to pay. My voice has deteriorated dramatically in one year, it is hardly there at all most of the time, and when I do have to force it, I get tremors. I agree, thank goodness for email! Jean AB/SD Virginia |
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Posted by: Doris St. Clair ® 01/25/2003, 19:27:00 Author Profile Mail author |
Hi Jean, I live in the western part of the state near Lexington and Roanoke. I have had about 12 Botox injections and they have worked 60 % of the time. The doctor that gave me my best injections left the area and I have decided for the time being not to have anymore injections. My husband has always been totally against them and now that we have only major medical insurance I can't afford them anyhow. What part of Virginia do you live in and how are you dealing with your SD? Doris St. Clair AD/SD VA
--modified by Doris St. Clair at Sat, Jan 25, 2003, 19:27:47 |
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Posted by: Jean C. phelps ® 01/27/2003, 09:14:31 Author Profile Mail author |
Doris, You are about 2 hours away from me..We have been through Roanoke and Lexington when I am heading to WVA. I am coping with all the changes that comes along with SD. We never were big socializers, so that really didn't make a change. Except I do find it hard that what friends we do have, they can't seem to handle the SD. They talk over me, don't let me finish sentences and cut me off. Which I find very annoying. I had to quit work, but truly I have enjoyed being at home. This October I was finally diagnosed with SD by my neurologist, which I was sent to not for the SD but for the migraines, that I have and have especially if I struggle to project my voice. My voice has deteriorated dramatically over the past year, and more problems have cropped up. I know have a heart problem (which I know SD) doesnt affect. Oh well it is great to just about turn 50. I wish there we could get a virginia group together, you live in beautiful country. But of course, I think Virginia is beautiful! Jean C. Phelps
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Posted by: Kim Lee ® 01/27/2003, 19:53:12 Author Profile Mail author |
I hear what you are all saying. Before I really understood what SD was all about, I would hear, "oh, your getting that nasty cold that's going around"; Or "are you ok?" "Are you crying". At first, this frustrated me to no end. I would just say no and end the conversation. Now, I tell people that I have a voice problem and then they apologize, and seem to listen to me better. This is my way of coping with SD. I even have trouble just saying my own name and then I fight really hard to get my voice up so no one would ask me about my voice. |
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Posted by: sue brammerlo ® 02/10/2003, 17:52:17 Author Profile Mail author |
Just wanted to share with group-I am a receptionist at a major university & am on the phone most of the day. I continually get comments "Boy you sound terrible, Hope you feel better, Do you have a cold?" etc. At the end of the day today, was talking to a lady on the phone & she said "I hope you get better". I explained that I always sound this way because of my voice disorder. She in turn said "I admire you for being so valiant!" Wasn't that a nice comment for a change? I have been told by many people how helpful I am (many people get frustrated being transferred to the wrong dept & I try to help them). If other unfeeling people who always give rude comments would just look past our voice & at the person behind the voice, they would see we have "feelings" too! |
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