I was attending a support group meeting that included a woman and her significant other. He told us a story with great remorse and I believe it is important that all who love someone with a voice disorder hear this.
The couple was in Vienna, Austria, touring the city. It had been a long morning and the man wanted to stop and get a beer. His girlfriend, who happens to live with spasmodic dysphonia, was so excited about seeing the various sites that she wanted to stop for that beer later. After a while and a lot of walking, he spotted a pub and knew that would be a great place to sample the local beers. So, he decided to feign exhaustion.
He put his hand to his chest and grabbed the wall saying, “I’m so tired.” He thought it would be a funny way to get his point across that it was time to stop. This couple is older and when the man grabbed at his chest, his girlfriend got scared and her quiet adductor spasmodic dysphonia voice became almost absent. She became absolutely terrified because she couldn’t call for help. When he saw how upset she became, he immediately told her he was fine and he was only joking and just wanted to get a beer. He told her he was being overly dramatic so he could stop for a while. What he realized at that moment was that she had a great fear that she never told him about…that one day she would be in trouble and wouldn’t be able to get the help she needed because of her voice.
She was upset with him most of the day, but she eventually was able to regain her calm and they both got a cocktail and talked about what happened. He never knew that she felt that way and that his joke had caused her great fear to be realized, if even for a moment. He knew he would never do anything like that again, and while he did his best to make it right, that moment stuck with him. At the support group meeting he told the story because he thought it was important for other loved ones to know that someone with a voice condition may live with deep fear of not being able to communicate in an emergency. This topic was discussed with others who shared some of their fears and real-life moments of terror because of their voice condition.
This is a topic we have never considered before and so our goal is to collect more information on fear and living with a voice disorder. We want to deepen our understanding and hopefully create tools to help.
