“It’s not that bad”
is the general response I get when I tell people that I have Tourettes.
People often think of Tourette’s as screaming curse words uncontrollably. As someone with tics that can be mostly disguised as "normal" —sniffling, eye twitching, waving — I understand why people may be surprised at first. However, recently my snorting tic has evolved into a sequence of snorting, waving my right hand, shaking my head, and rolling my eyes. On a good day, I do it once every few hours. On a bad day I do it every 2 minutes with some other tics peppered in between. So when people I interact with everyday say “they can’t even tell” that I have tics, I have a hard time believing they didn’t notice anything.
I don’t talk about my tics very often because it is usually not relevant and up until recently I couldn’t clearly explain why I feel the need to tell people. However, the recent worsening of my tics has begun to significantly affect my ability to do things like attend meetings, focus on conversations, and operate in quiet spaces. This isn’t the first time this has happened and it certainly won’t be the last, so in an effort to convince myself that I should ask for support more often, I want to venture out of my comfort zone and talk about what Tourette’s is and the ways that it has affected my life.
Despite my best efforts, this essay is quite long, so I have taken the liberty of splitting it into sections should you want to skip around.
What is Tourette Syndrome?
Tourette Syndrome (often abbreviated to Tourette’s or TS) is a condition of the nervous system that causes people to have ‘tics’. The CDC puts it perfectly:
“Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. For example, a person might keep blinking over and over. Or, a person might make a grunting sound unwillingly.
Having tics is a little bit like having hiccups. Even though you might not want to hiccup, your body does it anyway. Sometimes people can stop themselves from doing a certain tic for a while, but it’s hard. Eventually the person has to do the tic.”
People can drop tics or develop new ones, and tics usually come in bouts, with weeks or months of frequent ticking followed by periods of minimal tics. Several factors contribute to the severity of tics, usually getting worse with excitement or anxiety and better when calm or focused. Common triggers include viewing someone else performing a similar action or experiencing certain physical sensations. For example, hearing another person sniffling sets off snorting tics, or wearing a helmet causes neck tics.
Tics are relatively common in childhood, with as many as 1 in 5 children having a transient or lasting tic at some point. Starting at around age 5, tics usually reach their peak in a child's early teenage years, lessening in their late teens and disappearing completely by their early 20’s. While the numbers are hotly debated, the rate of TS in children and adults is suspected to be around 0.6% and 0.01% respectively.
The disorder predominantly affects men, with a 4:1 male:female ratio, and preliminary research indicates that men and women have different presentations of TS. Coprolalia - socially inappropriate vocalizations (e.g. cursing) is commonly used to depict Tourette’s in media, but only 10% of people with TS have Coprolalia.
The comorbidities of TS include ADHD, OCD, anxiety, depression, learning disabilities, and behavioral issues. While there is no cure for TS, there are treatment methods showing some success. These include treating the co-occurring disorders, cognitive behavioral therapy, meditation, and habit-reversal training. In terms of psychiatry, all FDA approved medications for TS aim to block dopamine receptors (i.e. antipsychotics) and can be effective in cases where behavioral treatment fails. However, there is a surprising lack of studies on medication efficacy for TS, and it is often seen as a last-resort due to the considerable side-effects associated with antipsychotics.
To learn more about TS, the CDC and Mayo Clinic have some great resources and if you have time, I have linked some papers at the end that I found very informative.
Growing up with tics
I have had tics all my life, but as a child they rarely bothered me; I was not the only kid with tics and they were relatively infrequent. Similar to my peers, my tics had mostly subsided in middle school and I expected to be rid of my tics completely before starting high school, but instead my tics got much worse.
It started slowly with an increase in facial tics (rolling my eyes, opening my mouth wide, etc.) my freshman year when I walked the hallways. By graduation I had visible vocal and motor tics that would happen throughout the day. As someone desperate to please people, I was racked with guilt of knowing I bothered people every time I was around. People really started to stare once I developed vocal tics, and now taking tests or listening to a lecture came with waves of embarrassment and shame.
For me, a tic is similar to scratching an itch in that it feels impossible to resist, but you still consciously make the decision to itch or not. So when I was developing all these new tics and doing them more frequently, it felt like I was actively choosing to make my life worse every few minutes. I was constantly infuriated by my lack of self-control. On top of that, I now had to dedicate a large amount of my mental energy to suppressing my tics, and because ticcing would cause me to lose focus as well, it became really hard to follow lectures or conversations.
People would unconsciously react to my tics, so I didn’t know how to process the fact that no one ever acknowledged them. The most that would happen is people would look at me and then quickly look away. I’m sure their parents taught them it was rude to stare. But it wasn’t just my classmates or my teachers who didn’t say anything. No one said anything. My friends, my family, my therapist all knew me well before the tics began, but no one ever thought that it might be an important thing to bring up, that it might be something I would want to talk about. In fact, after the first two or three times I would do a new tic, they would cease having any reaction at all. Sometimes I would be relieved when a stranger stared at me because it meant that it at least wasn’t all in my head.
For two years I didn’t talk to anyone about it, even though I had (for unrelated reasons) a very comprehensive mental health team. When I finally told my therapist, I was hoping for a strong reaction; I just wanted someone to acknowledge them and give me clear action items.
But she said she hadn’t noticed anything. No further questions, no additional probing, nothing. To me it was obvious that developing many noticeable tics that occur with high frequency significantly decreases one's quality of life, but everyone I knew acted as if it were a minor inconvenience. I suppose I did take their reactions as a form of advice, because I leaned into denial much more after that.
I told myself that my tics were going to go away at some point, and I just needed to act like nothing was wrong until I could get my “real” life back. Sadly my tics really leveled up in college: loud squeaks, rubbing my eyelashes against my eyes while sticking my tongue out, shaking my arm like it had caught on fire, barking like a seal, etc. Everyone around me still acted like my tics didn’t exist, but I had to restructure my entire life around them; now almost every activity required significantly more planning and energy.
For example, the absolute bane of my existence was exams in large lecture halls. My main tics at the time were squeaking and moving my eyes side to side. Keep in mind that silence makes my vocal tics louder and stress makes my tics more frequent. 6-12 times a semester, I would take a test worth 50% of my grade, in a dead silent room that carries sound, alongside 400 students that expected silence, with a proctor that ensured no one's eyes wandered from their paper. It was like that movie SAW but Tourette’s edition.
If I tic’ed too much, I was going to disrupt everyone's focus and possibly get honor coded for “looking at other students’ papers”. Not ticing was obviously not an option, so I had to suppress my tics, deal with the shame of having to tic once I couldn’t hold them back, and then suppress them again.
The problem is I can’t focus well if I suppress my tics, I can’t focus at all while I’m ticing, and I can’t focus if all I’m thinking about is how distracting I am to other people after I tic. Back then the solution I came up with was to spend a ridiculous amount of time learning all the material by heart so I could be less stressed going into the exam and would know how to do most of the questions immediately. That was important, because if I didn’t know how to answer a question immediately, I would wonder if the other students also didn’t understand the question. Then I would wonder if they were annoyed because they kept getting distracted by these random squeaking noises. Then I would think about how many tics I had done in the exam so far and what the chances were that the next time I tic’ed the proctor would come yell at me. Then I would get annoyed at myself because I should be focusing on the question, and if I focus on my tics then I would tic and I cannot tic right now. Then I would tic.
It was certainly a great motivator for learning the material by heart but definitely led to a lower GPA.
You may be wondering why I didn’t just ask to take my exam in another room. Well, Berkeley CS exams are a serious ordeal involving hundreds of TA’s and thousands of students; I couldn’t imagine them changing things for just one person. In my mind, I’m already being inconsiderate by ticcing in front of people, so I should be grateful that they don’t kick me out of every room I’m in. I truly believed that if other people could do it then I could do it, and saying otherwise was making excuses for being lazy.
Then my mom made a throwaway comment to me on Christmas Eve.
“Well, you probably have Tourette’s.”
Holy shit.
My mom had known this for years and didn’t think it was an important thing to tell me, but boy it flipped my perspective. It’s sad that I put so much weight on a diagnosis, but that diagnosis felt like an explanation and more importantly, a label that made me ‘deserving’ of help. I joined the disabled students program, where an absolute angel of a man met with me to talk about the ways my tics were affecting me and my ability to succeed at school. It was the first time someone asked me about my tics, the first time someone believed me when I said they were causing issues in my life, and the first time someone wanted to help. I had become so used to bending over backwards trying not to bother anyone with my tics, and this man was offering to change the way things were done so I could be comfortable.
My life didn’t return to “normal,” but at least I got to take my exams in a smaller room.
[Side-note: my experience with Berkeley DSP was much more positive than other people I know. Recently, there has been criticism from several disabled students organizations that DSP is severely understaffed and under-resourced, resulting in long wait times to join the program and poor quality of care]
Living with Tourette’s
I no longer take exams (thank god), but things like meetings have the same problem, and it’s hard to focus on what is going on. In those situations, I tend to ask a lot of questions and talk a lot in discussions, because it forces me to pay attention to the conversation, and I don’t tic when I talk. Motor tics are usually less disruptive to other people but more painful/tiring than vocal tics, so tics that involve moving my eyes or flexing my muscles can result in having to leave work early or cancel plans. Externally, I imagine it can be harder for those around me to focus or present when my tics are particularly noticeable, and sharing a room with me during conferences or retreats must be at least a little bothersome. Even if that isn’t the case I’m always worried about it.
Most people only notice my snorting or eye movement tics, but I have about a half-dozen at any point in time and the frequency of each changes day to day. When I get a new tic, it’s a waiting game to see if it disappears after a few weeks or stays for years. For instance, I developed my snorting tic because my nose was stuffy for a few days 3 years ago, and here I am, still doing it. And to give some idea of how tics have the knack of developing at the worst times, I developed that snorting tic, often accompanied with sniffling and coughing, in September of 2020, when fear of coronavirus was at its strongest.
I would say during my waking hours, I tic or think about my tics around every 5 minutes. It’s been almost a decade now and I still feel guilty and embarrassed everytime I tic in front of other people. I have lost the ability to be unnoticed. I can’t go to the grocery store or the gym without getting weird looks, and sleeping in the same room as other people can be a nightmare. I don’t go to libraries anymore. I stay away from movie theaters, lecture halls, museums, shops with no one in them, and rooms without easy exits. I snort so hard I get dizzy, and my abused sinuses make it feel like I have a perpetual cold. If I’m overwhelmed or having a bad day my tics are usually worse, and on those days where they are nonstop, I struggle maintaining any amount of self-respect.
It's humiliating, it's exhausting, it's painful, it's distracting, it's annoying, it’s time-consuming, and when I think my tics are finally subsiding, they come back with a vengeance as if to remind me that they are never going away.
Of course, I have learned to co-exist with my tics and luckily I lead a very privileged life in other ways. My goal is not to complain about my struggles, rather to give some insight on what Tourette’s is like on a daily basis.
Why you shouldn’t say “it's not that bad”
If you were to tell me, “I’m slower than you are at running,” and I responded with, “come on, we’re basically the same pace,” you would probably feel bad if you started to lag behind. You would also be less likely to ask if I could wait for you to catch up. Similarly, when people tell me it's not that bad, it fuels the belief that I am not “disabled enough” to talk about my tics or ask for help if I need accommodations. I can (and do) try to find ways to function like everyone else without being too disruptive, but despite my best efforts, I have to tic.
I don't tell people I have Tourette's to apologize for my tics. I tell people to make them aware that I may need accommodations in the future. For me, that would be things like walking out of a room more often than normal during classes to let my tics out, skipping a group meeting if my tics are bad that day, or even working in a meeting room instead of my desk if my tics are bothering someone. They may seem like things I don’t need to ask permission to do, but it makes me more comfortable knowing that you understand beforehand why I do them.
What to do instead
Now that you have the 411 on Tourette’s, here are some scenarios in which you can help:
We don’t know each other well and I just told you I have Tourettes: respond with “thanks for letting me know.”
You are a friend and I mention that my tics are bothering me more than usual: interpret that as me telling you I am having a really bad day; ask if I want to talk about it and if you can do anything to help. Usually the answer is no, but it helps me feel better regardless.
You are my advisor/professor/manager: try to periodically check in and see if I am running into any problems doing certain tasks, and if so, help me brainstorm possible solutions. Once every 4-6 months would be fantastic, but even doing it one time is enough to get the ball rolling. If you want to really go all out, when you are planning a big lab-wide event, ask me if it passes the ‘Tourette’s-accessible’ test.
My tics bother you in certain situations: if there is something I can do about it, please tell me. It’s much better for both of us if I don’t have to guess when you’re bothered and you don’t have to be bothered for the sake of my feelings. Rule of thumb is you should only expect me to do things that you would do for me if asked. For instance, if you’re giving a presentation and you know that my tics will distract you, ask if I can join via zoom instead and I will happily do so. If you sit near me and my tics are making it hard to focus, ask if I can move somewhere else and unless I’m in the middle of painting my nails, I will oblige. If I move but my tics are still bothering you, sadly you may just have to deal with it. I tic even more when I’m home so I will not leave work if asked.
You read this essay and realized you did one of the things I told you not to do: don’t apologize, I’m not angry at you. Just think of it as you would any feedback, focus on the potential for improvement, not the missteps of the past.
I haven’t talked to you about my tics, but you have a question about them: ask! I may not have a great answer for you because I am still figuring this stuff out myself, but I will certainly try.
If you read this essay and want to share it with other people: please do :)
If you noticed someone in your life has recently started developing tics: PLEASE talk with them about it. While this situation no longer applies to me, it’s the most important piece of advice I would have given the people in my life if I could go back. I can’t fully convey how terrifying it is to develop tics and how isolated you feel when no one acknowledges them, and it would have significantly changed my life for the better if my parents or my therapist took me seriously when I said that my tics were a problem.
As every therapist on earth says: more communication is better than less communication.
Bonus Section: What not to say
As a bonus, here’s a list of things you shouldn’t say to any person with a disability or chronic condition, accompanied by examples of things people have said to me and an explanation of why you shouldn’t say it. If you were one of the people who said one of these things to me, sorry for the callout, no hard feelings.
Telling people they look/act differently than what you would expect for someone with that condition.
Example: “You have Tourette’s? I didn’t even notice.”
Explanation: if you were to tell me, “I’m slower than you are at running,” and I responded with, “what are you talking about, we’re basically the same pace,” you would probably feel bad if you started to lag behind. You would also be less likely to ask if I could wait for you to catch up. Similarly, when people tell me it's not that bad, it makes me think that I am not “disabled enough” to talk about my tics or more importantly, ask for help when I need it.
Downplaying their condition
Examples: “it’s not that bad”, “but I mean, tics aren’t big problem for you”
Explanation: for many people, it is that bad, and intentionally or unintentionally downplaying their condition is invalidating. Try instead asking them how they are affected.
Questioning their diagnosis.
Examples: “You don’t have Tourette’s, that’s just stress”, “Are you sure that’s Tourette’s? Because my friend in college has Tourette’s and they didn’t do XYZ.”
Explanation: I guarantee that the person you are talking to knows more about their condition and their body than you do.
Assuming their condition is static
Examples: “But you didn’t do this tic before”
Explanation: conditions have symptoms that change constantly and the severity of the symptoms is often episodic. Expressing your surprise can come off as doubting their condition. Try instead to rephrase your statement into a question about their condition and how it changes.
Stating that they are getting better
Example: “I haven’t hear you tic in a while, they must be going away”
Explanation: people can look like they are getting better without actually being better. Even if they are better at the moment, saying as much can imply that you expect them to continue to get better, making it harder for them if/when it gets worse again.
Providing obvious/general solutions
Examples: “You should get some rest”, “You should stop caring about what other people think”
Explanation: giving simple solutions to complex situations demonstrates a lack of understanding and can come off as patronizing. Similar to (2), they probably know more than you about what they can do to manage their symptoms. It’s like telling someone with anxiety to just relax; it just doesn’t work like that.
Nothing (this mainly applies to people who know the disabled person well)
Example:
Explanation: it is hard for disabled people to start a conversation if the topic has never been talked about. It could be that the person prefers not to talk about their condition, but it’s good to let them know that they can if they want to.
Last thing. Some people wonder if they should use the term “disabled” or “differently-abled”. From what I have researched the majority of the disabled community seems to prefer disabled. There are articles that explain this much better than I can, but in short, disabled is a useful term because it conveys that a person is less-able to do certain things, while differently-abled implies that a person can do everything an able-bodied person can do just in a different way, setting a harmful expectation.
Interesting Papers
[1] Singer HS (March 2005). "Tourette's syndrome: from behaviour to biology". Lancet Neurol.
[2] Baizabal-Carvallo JF, Jankovic J. Sex differences in patients with Tourette syndrome. CNS Spectr. 2022 Feb
[3] Bitsko RH, Holbrook JR, Visser SN, Mink JW, Zinner SH, Ghandour RM, Blumberg SJ. A national profile of Tourette syndrome, 2011-2012. J Dev Behav Pediatr. 2014 Jun
[4] Schaefer, Sara & Chow, Christopher & Louis, Elan & Robakis, Daphne. (2017). Tic Exacerbation in Adults with Tourette Syndrome: A Case Series. Tremor and Other Hyperkinetic Movements.