If you have a chronic voice or communication disorder it can come with many challenges. Difficulties in all aspects of your life - ordering food at a restaurant or drive thru, talking on the phone, being heard in a noisy environment, socializing, dating, interviewing, meeting new people, dating etc. The list goes on. The little tasks that used to be automatic and easy can now be extremely difficult or frustrating. A chronic communication disorder can lead to significant feelings including anger, frustration, sadness, loss of self confidence, even loss of one's own sense of self or identity. You may now choose to avoid social gatherings or even think about speech more - possibly thinking about what you're going to say even before you say it or determining if it is worth it to say what you really want to say depending on how your voice sounds. It can be frustrating or anxiety provoking to not know what will come out of your mouth when you speak or to realize that it probably will not sound as you want it to. The psychosocial symptoms of a voice disorder aren't often discussed. However, they are significantly impactful on one's life and should be acknowledged. If you are experiencing any of these symptoms, you're not alone!
I think there is sometimes a notion of “there are worse things”, when discussing communication disorders. Especially during the time of this pandemic with coronavirus. And that may be true. Spasmodic dysphonia or other voice disorders can’t kill you. There are many diseases that can and many disorders that are debilitating on many levels. And there are many devastating things going on right now. But I think that this can sometimes come along with a sense that those who have communication difficulties are not allowed to feel disheartened or frustrated or downright angry about your voice or communication.
I’ve always been a believer in thinking on the bright side, turning negatives into positives, and in growing from challenges. But I’ve had many days where I just want to shout (or let’s be honest probably more like write on those days…), “this is hard”. I have sometimes found myself feeling guilty for feeling these feelings or feeling that others will not understand the true significance of these emotions because as we all know, it’s not a life-threatening disease. And I've heard that ring true for many patients with voice disorders too. But I think that in order to deal with a chronic disorder, you have to acknowledge your feelings and know that they are valid. Living with spasmodic dysphonia or any chronic voice or communication disorder can be debilitating and affects quality of life significantly for many. No, it can’t kill you, but it can rob you of life in different ways. It can steal your ability to connect with others, to do your job, to have self confidence, to be you - which if we’re talking about it- is everything. It can result in loss of life in a different way.
It can be easy to get down about this disorder. Particularly in a more challenging voice or communication period like right now. You may have experienced negative self talk, thinking negative thoughts about yourself while thinking about what others must have thought about your voice when you spoke or if you assumed they were making judgments about you or your personality because of your voice. But know that your voice is not you. You still have important things to say, even if it comes out a little differently!
I think that recognizing how challenging this disorder is and letting yourself feel this without guilt, is part of the process. I recognize this, I’m able to also see how these same challenges have made me stronger. Personally, I think it’s shaped me into the person I am today- yes, a good way. Dealing with SD day to day can be like climbing a personal mountain. Every. Day. And that makes you strong. Recognize that yes, there are a lot of people in a much worse position than me, comparatively and try to feel grateful for what you do have. But also recognize that what you're dealing with is HARD and that you're doing the best that you can.
Everyone deals with their own sets of challenges and obstacles daily - some are just more apparent than others. If you need support know that you’re not alone in dealing with SD or a debilitating chronic communication disorder. Seek out an SD support group, support from others who know exactly what you are going through in the Facebook page, read more posts on this blog here, or have a discussion with loved ones to open up about your feelings.
Feel free to always email with any questions or comments.
You got this!