Some questions people have asked about MY experience with TS and the answers today!
Q: What is the worst part of Tourette’s for you now as an adult?
A: I would say the worst is the physical pain due to overuse injuries. Especially my neck, eyes and Jaw. Repeating a tic thousands of times a day for 40+ years causes a wee bit of damage 😉 Even when it hurts, I cannot control it so it can be hard to handle some days.
Q: What was the worst part of Tourette’s for you as a kid?
A: Back then, they did not have even a smidge of the knowledge they do now. I was diagnosed, and mom was told it would go away… to just ignore it, its no big deal. School was the worst part for me, and home life. My dad was abusive and he punished me a LOT for my TS (he doesn’t believe in illness so I was just written off as a bad kid) things got really bad and I left home when I was very young. Schools were not prepared to deal with the learning disabilities and tics, so I got written off there too – spent a lot of time being bullied by adults, in detention, and failing my classes epically. Therefore I say get tested! Get support! (I will share more about my journey through education as an adult advocating for myself!)
Q: If you could do over, would you get rid of your TS?
A: This one gets asked a lot and it is a bit of a shitty question because there is no right answer. I would get rid of the abuse, the pain, the injury, and all the damage caused both mentally and physically by having TS. However, it has made me who I am today! My humor is my humor because I developed it to cope with and hide my TS. My invasive thoughts also contribute to my personality in ways that are positive, as hard as it is to believe (I will talk more about this later too!) Get rid of my ts and growing up becomes easy, I have a lot less pain, but then lose a huge part of my personality and humor? How would YOU answer it?
Q: Am I aware when I am ticking, do I know I am ticking?
A: Sometimes yes, because it annoys me, and it hurts. Sometimes not, if I am distracted enough I just blissfully tic away without knowing unless someone points it out. So yes, and no lol I prefer to be unaware of it and not worrying about trying to hide or suppress it.
Q: How and when did you get it?
A: TS is hereditary and while I am not aware of anyone else in my family that has it, I would suspect my father was the genetic lotto for TS. I remember him doing funny things that now I would absolutely identify as tics, but most people would not even be aware of them as such. As for When – I was quite young and in elementary school. I remember we all were eating lunch on the floor in the gym and my first remembered tic was me popping my left shoulder out of place causing my shoulder blade to stand up sharply. I remember one of the kids screaming and crying because of how fucked up it looked… and that was my intro into TS. Before grade 4… but I would need to ask my mom. LOL
Q: Do tics hurt?
A: Yes most of them do. I clear my throat 1000 times a day so it is raw and hurts similar to strep throat. I squish my eyes shut and roll them back 1000000 times a day so I have a lot of eye pain. I jerk my neck, jaw, and back 1000 times a day in ways that cause a lot of sore muscles, spasms, cramps. Etc. I have some tics that do not hurt me though such as repeating things.
Q: Does something trigger tics?
A: Yes and no again – I know, so helpful. Tics happen all day long, and sometimes even in your sleep! So the no answer comes from this camp. We just tic. HOWEVER the yes comes from this – emotions and mood swings be they good or bad OFTEN cause tics! Not in everyone with TS but in a good pile of us. My wife enjoys giving me REALLY yummy food because I tic like crazy because my emotions are happy! I tic more when I am stressed out too!
Q: Do people laugh/make fun of you? Does it bother you if people laugh at your tics?
A: Sometimes yes… people make fun or laugh, or give me odd looks. It bothers me if it is a stranger who says something, laughs, or stares at me yes. If it is friend/family it depends on the situation. If it is a tic we can share a giggle over, its ok. If I am a bit moody or having a hard tic day and someone cracks a joke at it, sometimes I eat their face. TYPICALLY though if its family or friends, and delivered the right way, we can share a giggle together. No one likes to be laughed “at” though.
Q: How are you so open about it? Aren’t you embarrassed?
A: It took me many, MANY years to be open about it. It has only been in the last 5 years or so that I began to be open about it, talk about it, educate about it, and advocate for myself and others. Yes, it is embarrassing much of the time but spending like 40 years being embarrassed, stressed trying to hide it, and being an epic failure because you refuse to ask for help is just silly and I am over that shit. LOL It does NOT mean I do not get embarrassed on my 12000th clear of the throat when someone sighs, huffs, gives me a dirty look, offers me a lozenge, etc. I very much feel embarrassed and ashamed and sorry to annoy them. I also know, however, that I work HARD to educate and support myself and others who HAVE TS… and THAT makes it worth being open. If I can help myself, and anyone else in this world to accept and be positive about their TS, then I have done a good thing. I want to be open so kids do not go through what I went through! So adults can get and hold JOBS and not face discrimination, and to prove we can KICK ASS even if we might look/sound different as we do it. Show yourself! Stand up! YOU are NOT your TS!
Q: How do you tell people you have TS?
A: It depends on the situation, there is not one canned answer for that! If someone is giving me shit about a tic I say “I have Tourette syndrome, which is a neurological disorder where my brain misfires signals and causes my body to react uncontrollably. I am sorry if it is annoying you, it annoys me too but I cannot help it.” This actually works for most situations, I also have some business cards with information and links on it for people who want to learn more, I carry them with me. If it’s friends or loved ones that do not know, I mention it when it is natural. If they follow my social media OR spend time with me though, they know pretty fast because I am just naturally open about it.
Q: Do you swear a lot?
A: You are asking if I have coprolalia… and the answer is no. It is quite rare in that only 10% of the TS population has the “Swearing thing”. If I am swearing at you, it is because you are a jackass. 😉
Q: I never see you tic! I would not even know you have TS!
A: You see and hear me tic all the time, you just might not be aware they are tics, or I might be suppressing them or covering them up if we are in public/at work/etc. Many of my tics are like every day things just magnified to annoying levels, so most people just think I have a cold etc. It Is also a lifetime habit to try and combine tics into a more normal movement… so my neck tic can often look like I am stretching my neck, etc. (as examples). When my tics are REALLY brutal in public, like my office (I work in an open office layout), I move to work somewhere more private to not make people nuts.
Thanks for asking questions about MY experience with TS. They are easier to answer than “TS” as a syndrome and it’s nice to see you are curious enough to ask. Feel free to send me more questions.
Thanks for reading!