I am a college student with Tourette Syndrome, ADHD, and OCD. Here’s my story:
Since the age of five, I have had a persistent itch. Each morning I try to subdue my urge to scratch it, hoping that today is the day this itch goes away. But the outcome of each day is the same as the last. I become consumed by the discomfort and the urge to scratch it. It develops from a mere distraction to the only thing on my mind. So, I scratch, and then again, and again. I scratch all day. Once I’ve started, I can’t stop. I scratch until my skin stings, and continue to scratch, endlessly chasing a fleeting feeling of satisfaction.
Since the age of five, I have had Tourette Syndrome (TS), a persistent itch. Throughout my life, it has been both a challenge and a gift.
Tourette Syndrome is a developmental disorder of the nervous system that causes repetitive, involuntary movements and sounds. According to the National Resource Center on ADHD, while “less than 10% of those with ADHD have Tourette’s… 60 to 80% of people with Tourette Syndrome have ADHD. The ADHD diagnosis usually precedes the onset of the motor or vocal tics of Tourette’s, although sometimes the two occur together.”
Expecting the Unexpected
Doctors never prepared me for the physical and emotional hardships which accompany the syndrome. Bodily soreness at the end of each day is a natural feeling. Pitiful glances from those who understand my condition are a common sight; apathetic laughs from those who don’t are a frequent sound. Removal from quiet places is a familiar experience as well.
You might be surprised, then, to discover that I do not see Tourette’s as a burden in my life. For me, it has been an opportunity for growth as a person. It has encouraged emotional resilience, ambition, and compassion. Without Tourette’s, I wouldn’t be the person I am today.
Self-Management is Key
To live effectively with Tourette’s requires conscious self-management. I’ve learned to do this in a number of ways.
- Educating myself about TS was the most effective way to not only understand myself, but also to understand how to live my best life through lifestyle choices. Knowing that my syndrome is a result of dysfunctional brain circuitry made me aware of the importance of helping my brain function optimally throughout the day. This knowledge also allows me to educate others and combat the many stereotypes surrounding the syndrome.
- Although many suggest that we should avoid stress to reduce the severity of our tics, this isn’t practical in the fast-paced world we live in, particularly for students. Instead of seeing stress as the enemy, I embrace it. I channel that energy into whatever it is I’m working on. This way, stress becomes a way for me to prepare my brain for a challenge instead of acting as a force working against it. Along these lines, when I engage in activities that demand great amounts of concentration, my tics become infrequent or nonexistent. Some examples of this are studying, playing a musical instrument, singing, writing, playing a sport, and knitting, among others.
- Over the years, I’ve also found that when I’m having severe tics, withdrawing myself to a calm room with minimal stimulation is rather effective. As a child, this was a private area in the nurse’s office at school. At home, this was my bedroom. Now, at college, it is my dorm room.
- Perhaps the most helpful thing for me to manage Tourette’s has been developing a support network with others who have it. Whether it be through an online forum or a group of individuals in person, finding others who share the same challenges as I do is comforting and reassuring. Nobody, except for those who experience it, can fully understand what it’s like to not have control over the sounds and movements we make.
While there are numerous ways to help manage tics in your daily life, it truly depends on what works best for each person. So, if you or your child has TS, get creative!
There ARE Advantages
The truth is that TS has the potential to offer numerous advantages. There is a reason that there are so many successful people throughout history who have suffered from the syndrome. From the U.S. soccer star goalkeeper Tim Howard to the renowned Canadian surgeon Morton Doran, TS does not have to hold people back. In fact, research has demonstrated many latent advantages, ranging from findings of enhanced cognitive control to exceptional timed motor coordination.
In my own life, I have found that I’m much better at impulse control than my peers, whether it’s something as simple as playing the game Simon Says or more complicated, like avoiding the procrastination of school work. The constant battle I face in suppressing my tics appears to give me greater control over non-tic related actions. Once I set my mind to doing something, I make it happen. Abilities such as this have led a considerable number of adults with the syndrome to grow to appreciate what makes them so unique.
Looking back, I attribute many of my successes in life to my syndrome.
- The physical and emotional challenges I’ve faced have made me strong.
- The suffering I have endured has made me compassionate.
- The desire I have to find more effective treatment options for myself and others has made me ambitious.
Really, Tourette’s is a fundamental part of who I am, and it is both a gift and a challenge. Yes, it has shortcomings. That constant itch can be really annoying and exhausting! But, strange as it may sound, it also has benefits. I can’t imagine how different my life would be without it.