This blog article was originally posted on New Jersey Center for Tourette Syndrome’s TS Parents Online Blog and is republished here with kind permission.
I hope the essay that follows about my experience dealing with Tourette Syndrome serves to help the individuals suffering from the disorder and their parents. I’ve made the essay as detailed as possible while at the same time not making it too long to read. I’m a male in his early 50s, who for virtually all of his life has had several motor and vocal tics, and I’ve lived with these tics not knowing where they stemmed from for most of it. The primary motor tics are: eyebrow raising and squinting, shoulder shrugging and torso moving. The primary vocal tics are: stammering (at times severe), rapid speech, altered (higher) speech volume, word emphasizing and the repetition of words or phrases. The motor tics have caused peer rejection at times (especially during my younger years). The vocal tics, however, I’ve found to be most debilitating to my social life and career because of not being able to communicate effectively; many times not being able to communicate at all because of severe stammering (causing me to freeze-up when trying to speak as if experiencing speech paralysis). If you can’t communicate, there is no point in how much you know because you can’t express it properly to anyone. In social and business settings, you fall short because you can’t express yourself properly without feeling humiliated, so you avoid speaking as much as possible. (If I had a nickel for every time I decided against speaking because I knew I would severely stammer, today I would have a really big box filled with nickels). In addition, I also suffer from some of the disorders often associated with Tourette Syndrome, and they are as follows:
- Anxiety in the form of a constant feeling of jitteriness or edginess (heightened in social situations)
- Impulsive behavior
- Being easily overwhelmed and frustrated
- Obsessive-compulsive behavior
- Awakenings during sleep.
All this taken together really hinders me from functioning normally. The first sign of tics, a stammer, occurred when I was about 5 years old. Facial tics started to show up when I was about 9 years old and prompted my mother to take me to see many doctors, who according to her all said that I would grow out of it and therefore nothing further was done. When I was in my early 20s and I felt that these tics (especially the vocal ones) were severely limiting me, I approached a close relative that I looked up to for help. This individual ignored my plea for help and instead told me in a disparaging way that it was I who was to blame for these tics and associated disorders. This had a very negative impact on me and prevented me from seeking further help and I went through the best years of my life thinking that I was responsible for these tics and associated disorders. Also, I must say that when I told my mother about these tics and associated, I didn’t get any real support from her either (but this was mostly because of her “old country “ mentality that made her unable to fully grasp and understand the situation, plus she had her hands full with my father’s serious mental illness). So up until I met my wife I was always on my own in having to deal with this difficult medical disorder. During the summer of 1999, my wife pushed me to go see a doctor because it was hard on her seeing me perform these tics. So during September 1999, I decided to go see my family doctor, who after listening to what I had to say mentioned that I most likely had Tourette Syndrome and he referred me to a neurologist. The neurologist confirmed the fact that I have Tourette Syndrome. Hearing the diagnosis was a huge relief for me because up to that point in my life I was living with this major difficulty thinking it was a personal weakness instead of a medical disorder in need of proper treatment, which I will discuss in my next entry.