Tuesday, August 23, 2011


Copralalia,  involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks, is a VERY rare symptom of Tourette Syndrome. In fact, only 10% of people diagnosed with TS have copralalia; however, many of us living with TS have had to deal with the prejudice caused mostly by media sensationalism. You've probably seen talk shows or movies that portray people "suffering" from TS who randomly shout obscenities or use highly offensive racial slurs. While I can understand the fascination the rest of society has with this tiny percentage, it is very important to me to debunk this assumption that we all have it.
While looking on cafepress.com for TS advocacy tshirts, I came across a lot of shirts with this sort of thing.

While I have a very good sense of humor about my TS, and John and I make jokes and tease each other a little bit as a coping mechanism, I would never wear a shirt like this. It would simply add fuel to the fire of a society that still kicks people with TS out of restaurants, movie theaters, and libraries. It keeps us separate and simply reinforces the stereotype that people with TS should be avoided.
My son just started 2nd grade, and he currently has a lot of motor and vocal tics. I have to go in every year and discuss with his teacher and the many support staff members that they do not need to worry that my son will scream "Fuck you!" when someone bumps him in the hallway.  
I certainly don't mean to demarginilize those with copralalia or make the assertion that they are making it harder on the rest of us. They have to deal with challenges the rest of us experience on a smaller scale. Being twitchy gets quite a lot of side-eye, sniffing usually evokes a lot of concerns for our health, and when my son snorts other children think he's pretending to be a pig and laugh. But I have actually had people back up with fear in their eyes when I announce that my son has Tourette's. Until the media representation of Tourette's is accurate, the stigma will only continue. If you're looking for accurate portrayals of people with TS, check these out.

Phoebe in Wonderland
A brilliant movie about a girl diagnosed with Tourette's. Watching this movie was like watching a moment in time in my own life, and it haunted me and made me cry and made me squeeze my son and tell him just how extraordinary he is.

I Have Tourette's But Tourette's Doesn't Have Me
These kids are badass! It's about acceptance. It's about education. It's about overcoming.

Wednesday, August 17, 2011

A Dad's Perspective: Disclosing Tourettes in the Workplace

Throughout my life, I've struggled with if, when and how to tell the people around me about my Tourette's.  In middle and high school, my tics were visible enough that there was no "hiding" them, so I there people around me knew, even if they didn't all have a label for it.  But when I left home for college, I had a clean social slate and my tics were subsiding by that point, so I opted not to be forthcoming about my diagnosis. I'm already an introverted personality type, so I didn't want to put up this additional social barrier, as I perceived it.  I also had a fear that publicly acknowledging my TS would poison my career opportunities (a fear I retain today).  Combine my tics with widespread misconceptions about TS, and I was scared people wouldn't hire me if they knew.

So, for the first decade of my professional life, I was silent about it. Given the wax/wane nature of Tourettes, there were times when it didn't matter.  But there were definitely times when stress levels were high, or stars were misaligned, or whatever causes these things, when my symptoms increased. I got very good at redirecting my tics into more "socially appropriate" gestures, or finding ways to postpone them ("postpone", not "suppress" - they usually came back with a vengeance that evening). But I'm sure my coworkers knew something was up.

I assume that most of the people around me thought I had "nervous tics"' or drank too much caffeine (which I do), or had bad allergies (I do at times, but sniffing and nose twitching/touching are also my most prominent tic). But I've never asked what people thought, so don't really know. Hell, given that I'm sniffing a lot and jittery/never sitting still, for all I know, people think I have a coke habit.

Then in 2008, I started working on a very stressful project that lasted two years. During this same time, my son's tics started to become very pronounced. This drove my tics to a level they hadn't been to since my teenage years, and it became very difficult to hide them. I again started in earnest the internal debate whether to disclose my condition or not. At this point, I had talked to my coworkers about my son's TS, so it's very possible they connected the dots on their own.  But I was in a consulting role, at a level which put me in front of client C-level execs and "decision makers". So, again, the fear of potential impact to my career kept me from putting a name to the assumptions. I don't know if this was the best decision - it's not like I could ask "would you hold me back if I told you this" and get a straight answer. But when it came down to it, I thought about the case where staffing decisions were being made, say for a potentially influential client, and the choice of who would lead the engagement was on the table.  What I feared was that the role would go to someone else 9 out of 10 times because you wouldn't want to put someone who tics as the "face" of the company. Again, I don't know that this would ever have happened, or that it would be a conscious bias.

After a couple of years, I left the consulting gig for an "industry" job.   In this case, I knew a couple of the guys on my new team, having worked with them before, and my role is not a client-facing one. One of the guys on my team that I knew also has a tremor, which also waxes and wanes. From what I could tell, people didn't treat him any differently because of it. I also have overheard someone in the office with a very pronounced stutter, but his coworkers were patient with him and acted as if it weren't there. All if this made me think that I'm ready to let go of this fear I have of disclosing my TS.  People I work closely with are going to notice the tics anyway, so why make them guess what's behind them.  Their assumptions are likely worse than the truth anyway. And how can I help my son confront his TS when I'm hiding from mine?  So I decided that if the opportunity presented itself, I would mention it. I wasn't going to force the conversation, but look for a natural place in conversations to throw it out there. And that eventually came while having a couple drinks with close coworkers on evening.  Now I just need to get more comfortable with the idea of being more "public" with it.