I read Arwyn's post yesterday and it has me thinking. I know that I have posted about similar things in the past but, I just have to say it again.
Spasmodic Dysphonia is such a "silent" disorder in more ways than the obvious. SD causes you to either totally lose your voice or to live with a voice which sounds nothing at all like your "normal" voice. The people around you notice this silencing. They notice that you are not talking as you once did. They notice that you don't talk much unless you have to. They notice that between Botox shots your voice rides that roller coaster of improvement and decline.
However, the part of SD which isn't observable is probably the most difficult to deal with: the psychological impact of SD.
People who don't have SD often minimize the psychological impact of the disorder. After all, it isn't like you are going to die if you have SD. You just have a problem with your voice! Sure, YOU try walking a mile in our shoes and then you will find out what it is really like!
First of all, you have to deal with the fact that you are "broken." No longer do you have a healthy voice. No matter if you have other ailments, the loss of voice hits you hard. After all, how many people ever dream that your VOICE could be taken away from you? The voice is the constant. No one really thinks about it too much but just takes its presence for granted. Suddenly, something is wrong and your voice isn't "right" anymore.
Next, you have to deal with the fact that there is no cure for SD. That means that you are broken and there is no way to "fix" you. In fact, science more of less ignores your problem (SD) because there are not many people who have the disorder (personally, I think 50,000 or more is enough) and the disorder doesn't "significantly impact daily life"(excuse me????).
So - you are "stuck" with this voice problem which has no cure and little research being done to find a cure. It feels like the medical profession has written your problem off as "insignificant." All of this makes you feel isolated. It makes you feel unimportant - at least in a medical sense. This causes a feeling of frustration.
Now, having a disorder which is incurable and which no one seems to know about (oh - did I mention that part? It is frustrating too!), you have to continue, as best as you can, your daily life. Your voice is no longer "normal" so people ask if you are sick ALL THE TIME. They ask if you have allergies ALL THE TIME. They treat you like you are infectious even after you assure them that you don't have a cold. After all, you must be lying because what else would make you sound so horrible?
Day after day you must deal with the same questions over and over and over again. Sometimes, you get the same questions from the SAME PEOPLE who asked them yesterday! These people start to give you "helpful suggestions" about how to take care of your voice. Drink tea with honey and lemon. Gargle with salt water. Drink plenty of water. Use this brand of allergy medicine.
As if any of that will help SD!
Mix in that you are basically unable to speak to people when in a noisy environment. Have you ever tried ordering food in a loud restaurant only to be asked to repeat yourself over and over and over? Then, when you still can't be understood, the waiter starts to treat you like a) you are stupid, b) you are deaf (interesting, don't you think?), or c) you don't exist.
Now you are dependent on other people to help you in social situations.
Finally (for this post - there is much, much more to dealing with SD), consider the telephone. Once an instrument that connected you to the entire world, it is now feared and dreaded. People on the other end can't hear you well enough to carry on a conversation. Every time the phone rings you hope someone else in the household will answer it so you don't have to. You feel isolated because of your inability to talk on the phone.
What does all of this do to a person psychologically? Well, basically, it rips every shred of self-confidence out of your body and throws it on the trash heap. It makes you feel as if you are not worth being heard. It makes you doubt your ability to think because you are unable to communicate your thoughts. It makes once sociable people into virtual hermits. Anxiety about talking in public or on the phone becomes a regular part of life. Frustration about your voice is a constant companion.
Depression creeps in to fill the void left by your self-confidence and it is darn difficult to get rid of!
SD is not just a physical or neurological disorder. It is also a disorder which deeply affects your psychological health in a negative way. Even the strongest of people are dealt with blows which are difficult to recover from.
It isn't a sign of personal weakness. It is a sign of just how horrible SD can be.
Voice Update: Still doing pretty well but my allergies are really causing a lot of drainage. The drainage is causing a lot of coughing and sneezing which is causing my muscles to tense up. Not good for optimum voice production. I am continuing my massage and exercises. Onward!
I had the surgery to correct SD, with Dr. Berke at UCLA, in July. After 4 months of recovery I have a functional (albeit not perfect) voice. The SD "clipping" is entirely gone, but sometimes I get gravely if I don't concentrate on good speech method.
Scott Adams - Dilbert cartoonist
Certainly makes me sad thinking about you SD sufferers and what you have to go through! I would hate to not have a voice! Do you ever feel like just writing down what you want to say and showing it to the person in front of you as an easier way to communicate face to face? Just a thought!
I think Blogger ate my comment, but it might show up...
@ Chris H.-
I used to carry around a dry erase board when I would talk completely in a whisper. Most of the time, though, if my husband was around I would just whisper to him what I wanted, and then he would relay the message. This was not effective when I was working retail, though.
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