"My Doctor Said It Was The Most Severe Case She'd Ever Seen": 31 Eye-Opening Confessions From A Woman With Tourette Syndrome
According to an estimate from the Tourette Association of America, one out of every 50 kids in the US has Tourette Syndrome or another type of Tic Disorder. But even though it's fairly common, the average person might not know much about the diagnosis, having picked up misinformation from film and TV characters — and because we don't often hear much from the perspectives of real people who have this condition.
One notable exception is Billie Eilish, who has spoken out in the past about her experiences living with this neurological condition in the often-judgemental public eye.
So, when I came across this Reddit thread from a young Scottish woman with Tourette Syndrome who invited others to ask her anything about her experience, I thought it was too fascinating not to share.
She started the thread by writing, "I have Tourette Syndrome. As a teenager, my doctor said it was the most severe case she’d ever seen. AMA [Ask Me Anything].
I was diagnosed in my teens (I’m 24 now) when I developed severe coprolalia (swearing tics), but I’ve been ticcing ever since I was around 2 or 3. My doctor at the time said it was the most severe case of Tourette’s she’d ever seen.
I’m here to share my experiences, answer questions, and help spread awareness about Tourette Syndrome. Whether you’re curious about what it’s like to live with Tourette’s, want to know about the science behind it, or just want to hear my story, feel free to ask me anything!"
Here are some of the most interesting questions and answers from her AMA:
1.Q: What are your symptoms, and what causes them to flare up?
A: I have a lot of tics, but my main ones are making squeaking noises, breathing tics where I have to inflate my lungs so much it hurts, and swearing tics (especially the word cunt). I have some racist tics, which I hate. I have a lot of muscle-clenching tics. I have self-harm tics like hitting and biting myself; sometimes I’ll touch hot stuff like if the job is on or a lightbulb or candle is on. I also can pick up new phrases quite easily or make comments on someone’s appearance.
2.Q: What does it feel like when your symptoms are occurring?
A: To describe the feeling, I’m gonna use swearing as an example. Suddenly, in the back of my throat, I get this weird feeling, and in my head, I know the only way I can get that feeling to go away is to say that word. The feeling will get more and more intense if I don’t say it, and eventually, it becomes unbearable, and I just have to let it out. So, my brain will want to feel the sensation of saying a word or the sensation of doing a physical action, and the only way to get rid of that sensation is to do what my brain wants me to do.
Stress is the main thing that brings it on, but also, if I’m not really doing anything, I will tic more, or if someone mentions Tourette’s, I’ll tic more, too.
3.Q: You said holding in a tic "becomes unbearable." Unbearable how? Is it pain?
A: The best way I can describe it is kinda like an itch or when you are trying to hold in a cough. It becomes so intense you can’t think about anything else but doing the thing to make the feeling go away.
4.Q: How long can you hold onto a tic before you feel you have to let it out? If you know your tic is going to be something verbal, is stuff like covering your mouth or finding a secluded place a viable option to make it less noticeable to surrounding people?
A: Yes, I can hold them for a few minutes so sometimes I’ll quickly run to the bathroom or something and tic there if it’s an option. I usually don’t do that, though, because I mostly let them out without really thinking since I know most people will understand.
5.Q: Do your tics feel exhausting or like a release?
A: Both!
6.Q: Is there anything that can help?
A: Being distracted! I have tried medications, and the side effects are terrible, so now I don’t take anything and just try to keep myself focused on work or hobbies. I also don’t really feel bothered by my tics anymore. I don’t get embarrassed like I used to, and I think that has made a big difference.
7.Q: What has been your experience with therapy?
A: I wish I got way more therapy! I was getting it for a while and I felt it really helped me, especially in terms of getting embarrassed by my tics. The only reason I stopped was because my mum was opening my mail, and she kept forgetting to tell me a letter came through for my appointments. So I did not know about them and missed them, which caused me to get removed from therapy (I was around 16).
8.Q: When and how did you get diagnosed?
A: I made a lot of noises and did random movements like rolling my head, bending my fingers, etc, and my parents just thought I was a weird kid. My psychiatrist told them kids do not typically make random squeak noises when doing everyday stuff because they “feel like they need to.”
However, tics don’t always mean Tourette’s, as tics are actually somewhat common in children. Tourette’s is usually when you have a number of physical and vocal tics. I ticced my entire childhood, but when I turned about 15, one day, I just had really, really severe swearing tics. It was literally overnight. I woke up one day, and while playing a video game, I started saying, “I’m a boxer.” Then, within a few hours, I could not stop swearing and saying very offensive things; I went to the doctor that week, who referred me to a psychiatrist, but that appointment wasn’t for months.
A few days after my doctor's appointment, I had a very severe tic attack at school where I was in a constant state of doing so many different tics at once, contorting my body in different ways, and ended up in the hospital getting sedated. And because of that, they got my psychiatrist appointment moved to the next day and I got diagnosed at my appointment with her.
9.Q: That also sounds incredibly traumatic for you as a teen. I hope things have gotten a lot easier for you/easier to manage!
A: Weirdly enough, it didn’t bother me much. The day I started having the swearing tics, I very quickly was just like, “Well, this is my life now,” and went back to living as normally as I could. I’ve always been someone who doesn’t focus on the bad stuff, though, and I always try very hard to find the good in things. I imagine it would be almost life-ruining for some people.
10.Q: What’s the best way a parent can support a child who is diagnosed with Tourette’s?
A: Ignore the tics! My parents were constantly saying, "You’re ticcing so much today," and it drove me insane. Treat them as normal as possible. All I wanted was for my parents to treat me just like a normal person and pretend I had nothing wrong with me.
11.Q: What are the racist tics? And how does that work? When do you say them?
A: The n-word is my most common racist tic. I say that most often around Black people, I think because I think to myself, “I really hope I don’t tic the n-word right now because this is not the time for that,” so then my brain is like, "Holy shit, you know what would be the perfect thing for us to say right now..."
12.Q: Can you warn people beforehand? Like, “I am having a Tourette tic, please excuse me,” and then start swearing?
A: Yes, sometimes, if I know I'm going to have racist tics, I will warn people.
13.Q: Can you get rid of the feeling by saying the same word quietly? Or singing it?
A: The word usually has to be said in a specific way, like my brain likes to really pronounce it all. Sometimes, I can mildly satisfy it by saying it quietly, but the urge will keep growing until I say it exactly how loudly my brain wants it to be said.
14.Q: Do you have other tics like head movements or spasms?
A: Yes, I have a lot of movement tics with my face, head, arms, legs, hands, and feet! Mostly stretching and clenching muscles but I also will hit myself and objects. I’ll jump in the spot and touch things I shouldn’t, like hot things. Sometimes, I’ll grope my partner. I have done so many things as tics it’s hard to remember them all.
15.Q: How has this impacted your work, your private life, and your relationships?
A: In terms of work, I do feel like older coworkers treat me differently sometimes, like they kinda treat me as if I’m less competent or a child, but apart from that, it doesn’t really affect my work life much. Sometimes, I’ll need to step away for a minute if my tics are really bad, but that rarely happens at work since I’m usually focused on what I’m doing.
I would say it has had a mostly positive impact on my relationships! I had one boyfriend who would sometimes get embarrassed in public, and his family would say things to him like, “Never have kids with her because they’ll be r*tarded.” But apart from that relationship, every other one I have had, my partners have mostly found it funny and have also been very supportive!
16.Q: Did you disclose your diagnosis to your employer before being hired?
A: I have never disclosed my Tourette’s to an employer until I have the job. I don’t know if that’s made a difference, but it’s what I do, just in case someone wouldn’t give me the job if they knew. It has not at all impacted my ability to interact with coworkers. I actually haven’t disclosed my Tourette’s to many of them so I actually have no idea what they think. I do tic in front of them but they never mention it.
I have never had any accommodations made for me outside of high school which makes university quite challenging at times. Any employer I have had have asked me what they can do to support me, so I assume they’d do something for me if I asked. When they find out I have Tourette’s, they are always visibly apprehensive but I just tell them I can work just like anyone else and it pretty much never comes up again!
17.Q: Are swears more common tics because they're considered taboo? I've always wondered why. What words do your tics focus on?
A: Actually, non-swearing vocal tics are significantly more common. Coprolalia makes up a very small percentage of Tourette’s. I usually do swearing tics when they’re least appropriate, so I think a large part of it is my brain doing the thing I least want to do. The word cunt is my most common swearing tic; I have no idea why but it was my first swearing tic and has stuck with me ever since.
18.Q: How do you feel about the "influencers" that have faked the condition for clout? Do you think it genuinely brings awareness to Tourette's or gives it a bad name?
A: I think it reinforces misconceptions about the condition. I also don’t think they properly show how frustrating the condition is cause they’re always laughing when they throw something or say something, and someone who actually has Tourette’s wouldn’t find it funny; they’d just find it annoying.
19.Q: Do you have any thoughts about the upcoming TLC show, Baylen Out Loud? I also have Tourette’s and this was a question asked in one of the support groups. Just curious.
20.Q: Is the correct response from friends/classmates to just ignore your tics as if it never happened? Does it get worse if people look your way and giggle?
A: Yes, it’s much better if people ignore my tics! If people acknowledge them in any way it makes me notice them more and that makes me tic more.
21.Q: Have you ever gotten in trouble for a tic?
A: Yes, one time a teacher at school hadn’t been told about my Tourette’s and she got me in trouble for swearing. Then, when I told her it was a tic, she got me in trouble for "faking Tourette’s!"
She got in a lot of trouble which I felt kinda bad about, because kids can be like that. In her mind, she was probably thinking, “If a kid has Tourette’s, I’d have been informed.”
22.Q: I have often wondered, could you learn to swear in a foreign language so people are less taken aback? Would that work for you? We have some wicked swear words in Dutch.
A: I don’t think my brain would want to swear in a foreign language as a tic. I think a large part of it is me not wanting to do the tics. I don’t want to offend people, so then my brain wants to do it.
23.Q: Do you ever "retire" or replace tics with new ones? Or stop certain tics all together?
A: Tourette’s typically gets better as you get older and flares up during times of stress. I don’t do as many offensive tics as I used to, but it’s not a choice — I think it’s partly because as I’ve gotten older I’ve very much accepted that it’s just a condition I have and there’s nothing to be embarrassed about, which makes me less anxious about it, which makes me do those tics less.
Some tics go away and sometimes you’ll get a new one and do that for a while then it’ll go away. I have a few tics that I’ve been doing all the time ever since I was a toddler that have never gone away.
24.Q: Do your tics get in the way while you're eating food or drinking water? Does it get worse with particular foods or beverages?
A: Because of my Tourette’s, I have have very severe sensory issues, especially with food! Sometimes I’ll spill a drink on myself, and there was a time when I’d spit food out as a tic. I wouldn’t really say those things are specific to a particular food or beverage.
25.Q: Do you find it hard to fall asleep?
A: Sometimes! If I’m really stressed, I’ll tic a lot in bed. Usually, I go to bed listening to scary stories and my boyfriend plays with my hair and because I’m focused on that I don’t really tic when I'm going to sleep.
26.Q: Does it affect you during sex or intimate moments?
A: Sometimes I tic when I have sex! It’s not very common though, as I’m so focused on the sex part my Tourette’s disappears when I’m doing it. I do have some sexual tics, though. I will grope my boyfriend randomly or when snuggling I have a humping tic which is quite funny but also confusing. My boyfriend will be like, “Are you ticcing or trying to start something?”
27.Q: Do you find jokes about Tourette's funny?
A: I usually really hate jokes about Tourette’s! People always tell the same jokes about it over and over and I just don’t find it funny at all. I do like the South Park episode about Tourette’s and find that funny!
28.Q: What if you have a tic while driving? Is it unsafe?
A: I can drive a car the exact same as normal people! I do sometimes tic when I’m driving but it’s not dangerous. If I can feel I want to do a tic that would be dangerous, I just suppress it until I find a safe spot to pull over. Because driving is a distraction, tics happen less often!
29.Q: Do you find it insensitive when people find your tics funny?
A: I don’t mind when people laugh. I know that it’s something people rarely encounter, so I get that it can be quite funny. I know a lot of people with Tourette’s and they all mostly feel the same way.
30.Q: Do people try to make you tic on purpose? If so, how does that make you feel?
A: Yes, all the time! When people realise they can influence my tics, they will find it very funny and keep trying to do it. I find it really annoying, but I’m not really the type to outwardly be angry at people so I don’t really stand up for myself.
31.Q: Are your tics increasing from answering all these questions about your tics?
A: Haha, yes, I have been ticcing really bad all day! I don’t mind, though, as I’m finding it so interesting seeing what questions people have and what people think about Tourette’s. I’m quite surprised at most of the questions. I thought people would have more weird questions.
Did any of her answers surprise you? Or was there anything she shared that resonated with you? Tell me what you think in the comments, and send this post to a friend who you think would enjoy reading it, too.
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