003 - Advocate

Tourette Syndrome Awareness Month started on May 15, and it runs until June 15; don’t ask me why they decided to start and end in the middle of the month! As part of my advocacy efforts, I thought it would be interesting to share my recent perspectives on my own illness. As with other posts, I will try my best to fill this post with positivity and optimism, despite the fact that having Tourette’s absolutely sucks and has caused me so much grief over the 20-year span.

I will start off with a basic outline of my story with Tourette Syndrome (TS) for people who haven’t met me (because if you meet me, my tics are very obvious). I have what my doctors classify as “severe” TS, and my tics are complex, ranging from vocal outbursts to cursing to banging my knees against the table until they bleed. My tics got significantly more severe and complex in college, perhaps because of the stress, and they got entangled with elements of obsessive-compulsive disorder (OCD). Sometimes I have to do a tic until it “feels just right” in my mind. As an aside, I want to draw your attention to the diagram that the Tourette Association of America (TAA) has put out. (Click to enlarge!) The point is that very few people just have TS, and TS often comes with a slew of other comorbidities that complicate treatment and compromise quality of life.

When I was in high school, I didn’t have any tics that caused me to swear, a symptom called coprolalia (Greek for “shit-talk”). I was lucky because having swearing tics could have gotten me booted. I was also lucky because my teachers were compassionate and because I was academically gifted, so many teachers thought it would be a waste of intellect if I were sent to special education or another school. For these reasons, I viewed my TS as more of a blessing than a curse because I had the chance to advocate for myself and to spread messages of hope throughout the school. In college, however, I gradually began to change my perspective as managing my tics became harder and more misunderstandings arose. My access to care was also very limited at Brown University; according to the TAA, at the time there were no known neurologists in the greater Providence area who specialized in treating TS. This makes sense, though. Movement disorder physicians often prefer to specialize in disorders that make money, like Parkinson’s and ALS. Treating Tourette’s just doesn’t rake in as much cash.

Now, I’m a graduate student at Emory down in Atlanta, GA, and I’m fortunate to have an extended team comprising a neurologist, a psychiatrist, and a behavioral therapist all dedicated to treating my TS and its comorbidities. Emory is the largest employer of Atlanta (beating even McDonald’s), and the University owns an entire building called the “Emory Brain Health Center.” After a few years of almost weekly therapy and monthly doctor’s visits, I have gained some control over my tics, and I’ve acquired the ability to relate to my obsessive thoughts differently so that they don’t dominate my behavior. This improved control comes at a price, though: I’ve now begun to hate my TS. It makes sense if you think about it. I retrained my brain to realize that my obsessive thoughts are useless and my tics serve no purpose, and I also practiced not engaging in the tics when urges arise. As I got better at this, naturally I thought to myself, “Why do I even have tics in the first place?” I began trying to suppress every tic I could, to a point where I started having tic “rebounds,” increased tic activity after periods of suppression. I’m currently working with my therapist on how to manage this bitterness.

I will probably write another TS-related post before June 15 because I’ve rambled on for too long already. But I wanted to share some tips you can keep in mind about TS and people who (might) have TS. I’ll be happy if this affects just one person. Some of these apply to other medical conditions as well:

1. Try to give people the benefit of the doubt. Someone might be angry because they had a really bad day, and not because they’re a bad person. People are different. Embrace the differences.
2. Avoid blaming or shaming the victim. People with TS cannot control all of their tics, because if they could, nobody would have TS anymore. People with TS aren’t “lazy,” nor do they “lack the willpower” if they can’t control their symptoms. You would never tell a deaf person they can hear better if they just “tried harder,” would you?
3. If it’s too much to ask you to accept people with TS, I ask you simply to tolerate. Understand that the person with TS isn’t trying to ruin your subway ride and isn’t trying to interrupt your library studies. Chances are you only have to deal with their symptoms for 30 minutes; they have to deal with it for a lifetime.
4. Please try to advocate. Stand up for people you know are being treated unfairly, and this goes for all underrepresented groups. Try to step in if the situation is not dangerous.

Much love to everyone, and thank you for reading! 

---