5 Things You Should *Never* Say To Someone With Tourette's
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- Опубліковано 26 лип 2024
- Hey everyone! Today I talk about 5 things you should NEVER say to someone with Tourette's! And WHY!! There are a few things that you should NEVER say to someone with Tourettes because they can be rude or offensive, and I wanted to debunk some myths and break the stigma surrounding Tourette's through this video! What are some things you shouldn't say to someone with Tourettes?
As a girl with Tourette's, I would love to spread awareness and education about my disorder, as I feel it is quite misunderstood in today's society. The media has made it out to be a swearing disorder only, which is far from true. I hope this video will educate you on Tourette Syndrome and tic disorders! Life with Tourettes can be difficult, but just know that we're the same as everyone else...except for the fact we tic like clocks! (:
Thanks for watching!
Follow me on Instagram! @ticcingclock
TikTok: @ticcingtogether
I don’t think I could ever tell someone with any disability “I want that”. That’s just rude…
For me, something I reaaaaally hate being told is “that looked intentional” “did you do that on purpose?” Like?? No, I did not throw that stapler across the room on purpose. Why would I do that? Not to mention telling someone with Tourette’s that what they did looked intentional can cause some serious mental problems and will have people with Tourette’s questioning if they really do have Tourette’s y’know?
I get similar issues with Autism :/. "It's not that big a deal, you just gotta get out of your comfort zone."... I don't have a comfort zone, I have a safe zone, the privilege to say "it isn't a big deal" is a privilege. Yet when I'm told that stuff I often feel so much shame because what if they're right and I just need to try harder? Whiiich usually results in some sort of breakdown or isolation. PSA for people out there STOP JUDGING THINGS YOU DON'T UNDERSTAND!!
@@3v1l73ddy That behavior that people show to you is disgusting, they should be ashamed.
it's crazy the things that folks will say to disabled people. I had someone come up to me in my wheelchair once and say 'it must be nice not to have to walk.'
Oh my goodness! I’m actually shocked! 😨 how ignorant they must be to the struggles disability brings. I bet their future self if cringing hard about saying that!😅
I was in a wheelchair for about 4 months after a traffic accident. People think it's like an amusement ride, but it's not. It was especially annoying having to take the bus to and from doctors appointments. Not to mention how exhausting it is! I really underestimated how hard it is. At least I was able to get out eventually, and I'm so sorry that someone said that to you. They're scum.
...what. People are really crazy at times, I'm sorry this has happened to you :( I was paralysed after I suffered a stroke and the thing I wanted the most was to get back to walking on my own as soon as possible, because not being able to walk just didn't feel right.
I fully agree with you. I've had people make comments about my depression and anxiety like that. "Have you tried being happy?" "Other people have it so much worse than you, theres no reason to be depressed." "See, everything worked out. There was no reason to have those panic attacks." 🙄 Like, thanks, that's really unhelpful.
I know right... 😒 I went through the same shit a long ago, and it's even more annoying when they ask you: "Why you never talk to me about that stuff?"
Um... I don't know, maybe because everytime I talk to you all that comes from your mouth makes me feel worse?!
I’ll never get why people say to stop doing something they can’t control. I was at work and a coworker told another to just calm down when she was having a bad panic attack. Like thanks for giving her the unhelpful advice😤
Ugh so annoying!!
Hi Carly,Tourette’s looks so exhausting. Do you get adequate rest? Do you need more sleep to cope with the more frequent tic days? Seems you would need extra sleep & extra calories…thanks for sharing! BTW: Would love to hear more singing! 😊
for me, after an active tic day i do need a good long sleep- its tiring! however for me, on more active tic days i do often find it harder to get to sleep because of my tics.
Yeah I was also wondering about sleep. Must be very uncomfortable I'm assuming.
My mother worked with this guy who had one of the worst documented cases of tourettes and this man literally had to wear a helmet cause he'd STAB himself in the head!!! People saying they want tourettes is fr sooooo beyond crazy to me. For example I have bipolar disorder and I wish MORE THAN ANYTHING that I was neurotypical. Not cool at ALL. Thank you so so much for making videos we need people like you. 🖤🖤🖤
Ahh, the one of "You haven't ticced today" happens to me sooooo much XDXD Like, I get these people are meaning well, and usually not ticcing for me means I'm not stressed and am super relaxed so it's like "yay you must be having a good day 'cause you're not ticcing!" and then it's like OOF y'all just opened the flood gates. There was this one time in school one of my teachers did it, and the minute she said it her face just DROPPED realizing what she had just done XD I loved her though, and she was super supportive of me, so it's a funny memory as opposed to a frustrating one.
I've been working up the courage to ask my parents to take me for a professional diagnosis recently so getting knowledge from other people with tics is encouoraging and makes me feel more normal and accepted and less like a freak. Thank you for what you do
🤍👼🏽 good luck 🍀
Oh Im diagnosed with a chronic tic disorder, but Im too scared to talk to my grandparents. My counselor is trying her best, keeping it between us
Hi..my name is Esther and I've been ticing for a month now and I also have anxiety and I've seen a few symptoms of OCD in me and sometimes I'm scared and I am also scared to tell my parents coz I don't wanna look like a problem or a burden. I haven't really gone to get a medical diagnosis coz I've not told my parents and I know I have to like tic for a year before I actually have tourettes but the way I tic it looks like it is progressing everyday and sometimes I'm so scared. I think I actually do have tourettes and I'm insecure and I'm ashamed of my tics. BTW I'm 15☺
I have Autism, and I sometimes have involuntary stims, and if someone asks me about the involuntary stims, or copies or quotes them, I kinda lose it. I start stimming, which can often be super frustrating, since people are often just trying to be curious. I wish more people saw these videos.
Question: is a tic kinda like a hiccup? Like, you can't stop them, they just happen automatically and can kinda hurt sometimes? Or like when you stub your toe and swear out loud out of reaction? Im genuinely asking, I'm trying to find a way to explain this to my family (I watch you to educate myself and hopefully the people around me too :))
I’d say a tic is more like an itch or a sneeze! It’s uncomfortable and has a build-up to it, but it eventually needs to come out
@@TiccingTogether I'm so late to this, but I only found your videos today. I don't have Tourette's but after binge watching these and listening to you explaining tics I think a really apt comparison could be restless leg syndrome? Granted I don't know how common it is for people to suffer from restless legs either, but I'd describe it in very similar terms; discomfort that keeps on building up, that you can try to ignore or suppress, but eventually you just have to move the leg. In my case even if I try to keep my legs still eventually they will just "kick" on their own when the discomfort hits its peak. If you've ever had restless legs you can confirm or debunk my theory :')
Still though, I really enjoy your videos because they are so educational! Keep up the good work!
@@Creppzu I've been wondering about restless leg syndrome. Is it ok for me to ask a couple questions? If it isn't you can just ignore this lol. Does restless leg just affect your legs? Or can you get it in your neck and arms and stuff too? I'm asking because I think I have it, I don't know how to get diagnosed, but I'm hesitating because it happens all over my whole body not just my legs. The only other explanation I've been given is "it's autism" but of all the things I've heard about autism I don't think I've heard anything like this. It isn't stimming, I also stim and I know the difference. Stimming is a choice, these jerks and kicks and punches and shakes aren't a choice. Like I can choose not to stim and even if I physically relax it's fine but as soon as I relax a little from the jerks I'm suppressing they just happen. They feel the way tics look. But I'm also pretty sure they're not tics cause... Well mostly cause I don't know much about tics and really don't wanna assume I have something. I've tried looking it up online and haven't gotten anywhere so I thought, maybe asking someone who has it would be good.
@@3v1l73ddy Sorry for the late reply! I'm by no means an expert, whatever knowledge I have comes from experience and internet lol. I haven't been officially diagnosed, but I score 10/10 when reading about the symptoms. Also in my country (Finland) I'm pretty sure it's hard to get an actual diagnosis, and medical intervention is only warranted if it affects your sleep to the point of insomnia, as it's more common to occur at night. That being said you can get them during the day as well if you sit or lay down for a long while, and that's the case with me too. If you want to get diagnosed I'm pretty sure you should be able to discuss that with a general practitioner. And from what I've gathered it can affect your arms, I think I've had that like... once, and after a quick google I read that it can affect your other body parts too. Does the feeling of discomfort instantly disappear once you move, or does it come back if you stop moving? Restless legs usually don't stop immediately despite the movement, but you have to keep moving them for a random amount of time. Could be a minute, could be five. And in my case (especially at night) it can come back after a while and you have to repeat the process of walking/stretching/jumping again. There's no one solid reason that causes it, nor is there any one treatment, but there are lots of good tips on the internet that you can try and find what works for you. Massages, socks during the night, warm or cold water/pads, exercise, to name a few. A colleague of mine said eating chips (salt) helped her, lol. Hope this is at least a little helpful :)
I nearly fell off my chair when you were explaining the randomness of vocal tics and how they don't correlate to what's happening: "I don't have rice". You are such a strong, amazing lady. Thank you for being brave and educating people on Tourettes.
this was actually really educational for me. i finally understand why!
- another person with tourette’s who got diagnosed at 14
Hi Carly, my son has Tourette’s (which I’ve commented many times before) and he doesn’t swear or really have any word vocal tics.
We did used to joke “he didn’t have the fun kind “ meaning the swearing but it was just a joke among us. It was meant really only as a way of dealing with it. We are a family that just laughs at ourselves and sometimes that’s how we deal with things. It’s like either laugh or cry.
That being said, you’re 100%. Correct, no one should EVER say that.
My sons is very mild and a majority of people don’t even know because his vocal tics are things we do every day like sniffing, coughs etc. his motor tics aren’t too obvious all the time either. It was honestly difficult as a kid because it was hard to tell if he was sick. I had to try to distinguish between it being a tic or was he actually sick.
My uncle's best friend from elementary through today is similar to your son. Mild motor tics that not everyone would pick up on. I never really knew why this guy always flipped his hair, kinked his neck and excessively blinked until I was an adult. I never mentioned it, because to me, it was normal behavior for him... I never thought to say anything.
@@MsAubrey my son grew his hair out just so he could hide his neck tic as flipping his hair out of his eyes!
@@betterwiththeirish Yeah, my uncle's buddy has always had hair down to the middle of his back. He's always had really beautiful hair too. 😁
Another thing about "I've never seen you tic" is that some adults "grow out of" most of their Tourette's. That happened to my cousin, who used to struggle with really severe Tourette's when he was in middle and high school (to the point where he couldn't attend school for 3 months because his tics were constant and complex), but now rarely tics (and he's not suppressing, he's told me himself). The sad thing is that my aunt (not his mother, who actually has Tourette's herself, but a different aunt) didn't even believe he had Tourette's when he told her - despite her being a very close family member.
I chuckled a little when you were explaining vocal tics like "I don't really got rice" do you have any idea where your brain could've gotten that from? Do you or other people with tourettes ever know where a vocal tic may have come from? These videos are interesting. Thank you.
I don’t even know where it came from & it’s honestly so random but funny
Carly, you're amazing!! And your bravery is something I admire. I'm 56. I knew there was something wrong when I was 4 or years old, but people said it was me trying to get attention or just a nervous condition. Puberty brought on my vocal tics.
But I didn't even know I had TS until I was in my early 20s. Back then even Drs didn't know about TS.
Thank you for this channel.
It helps even older ppl like me. ❤ THANKS!!
Thank you so much for your kind comment! 🥰
As a wheelchair user who ended up in a chair in adulthood I am constantly surprised how many people want to be in a wheelchair because of all the freebies we get! I sure would rather be able to walk than park near the doors going shopping, getting a person in for free at the zoo Etc! In this respect I really understand people saying "oh your so lucky"
Thank you for your channel! As a disabled person I like to find out about other disabilities from people with these disabilities!
I have a friend with tics, I started watching this channel to understand her more. Thank you for teaching me more about my friend
I have a friend with Tourettes and these videos are VERY helpful, thank you for educating me!!! I love you and your content!!!
For me suppressing gives me awful headaches. I love how you explain suppression
thank you so much for this video, it's very informative and i would be sure to remember this if i ever meet someone who has tourettes.
Definitely never say "I know so-and-so who has tourettes, and they're perfectly fine" to someone with tourettes. This applies to other disabilities too. It completely invalidates that person's feelings and experiences. I don't personally have tourettes, but I've had that said to me about my disability, and it's horrible.
So I'm not someone with Tourette's syndrome, however yesterday I tried to suppress a yawn and it was so uncomfortable and I can't even imagine how that must feel all day everyday. Thanks for bringing awareness!
I agree with this. One of my teachers said that my friend was lying when he told the teacher about my tourettes because i was embarrassed to tell him about it. Thank you for taking the time to educate people and make it easier for us to be in this crazy world!
It really does look exhausting :( You're so strong and honest ♡ I appreciate all your videos, it really shows tourettes and living with it as a whole. I'd love to see some of your art!!
My partner of 4 years has Tourettes and not just this video but other videos as well that I've seen have been extremely helpful on Tourettes! He has talked to me a lot of how it literally hurts him, how he feels embarrassed sometimes, and it's so sad to hear. I always comfort him though and tell him that I love him no matter what❤️ thank you so much for the education, your insight, and knowledge.
I’m glad you find my videos helpful!! Sending you & your partner love 💗
It drives me crazy when people want to tic or have tourettes.
I don't have tourettes but my c-ptsd gives me intense shame and guilt attacks to the point it triggers a heavy impulse to punch/hit myself repeatedl, like you explained about your tics, its something that can be redirected but eventually has to come out.
I honestly cannot grasp how ppl would think that's cute and quirky. Its a constant battle and its exhausting.
That said, thank you so much for the informative videos, ive learned so much while only having subbed just a few weeks ago.
Something I learned the hard way - never ever ever copy someone's tic on purpose. I'm neurodivergent and often get urges to parrot noises I hear, so one night while my husband was making a really loud shout-groan, I joined in cuz i'm a dummy who thought "hey I need to scream too" and he did not like that at all.
I recently had someone tell me that acupuncture could CURE my Tourrettes! As if its MY fault im CHOOSING to still have it.. I get the whole 'this might be a cure' is coming from a good place.. but it comes across and feels so horrible.
Hi Carly,
Another think about fake-claiming is I like to remind people their own perspective is both flawed and fallible. I don't have Tourette's; I lost my leg to cancer two years ago and there are a lot of things I do that people have never seen me do. Since then most people have never seen me out of my wheelchair, but I can and do get out of it and will one day be able to walk with my prosthesis.
Even my own caregiver needs constant reminding that what he observes and what is true are often two different things: one day he tried to leave my chair in front of a door at the oncology center where I am treated. He tried to justify it with "That door is never open!" It was a door that, to be fair, he had _never seen unlocked or in use_ , so I gently reminded him that what he observes is actually a tiny fraction of that door's existence.
It's a good thing he moved me instead of trying to argue, too, because minutes after he left a nurse flashed her badge against the locking mechanism and came through that very door _backwards_ wheeling a cart full of supplies. 🙃
I always get so excited to see when you've uploaded a video! Thank you again for sharing your experiences and journey with us :D Your energy and the way you approach topics with empathy is so amazing. You feel incredibly genuine and even though I personally do not have Tourette's, I do have chronic pain and other health issues. They're obviously different than what you go through and I'd never wish what either of us go through on anyone, but knowing someone out there approaches their condition with such honesty and sincerity feels very resonating to me. I think because of your communication skills and your very real desire to spread education and awareness of your own condition, you may end up reaching an audience like me as well who may not have Tourette's but still resonate with topics you have- like how people who don't have a chronic condition can have trouble getting there with understanding and empathizing with daily struggles and ask offensive questions (even without realizing how painful those questions can be) because their experiences are so vastly different than ours. So on that note, I hope your videos also spread to folks outside the sphere of those with chronic conditions, especially to people who are open-minded and open-hearted and really do want to learn about such experiences so they can better empathize and understand other people who live differently than them. I think that education and awareness is an amazing goal, and you're totally reaching it! Your videos really allow people who don't have Tourette's to see, hear, and hopefully begin to understand the reality you live with every day, and I hope that empowers the community and breaks down social stigmas. One of my favorite videos of yours was your collaboration. I would love to see all sorts of different collaborative efforts to raise awareness for your passions and the topics you feel need to be talked about more. And I love that you're calling for a discussion as well. I wonder if you'd ever like to explore a platform like Discord or something to inspire a community to discuss and support each other, because I think you've got a great following base right now :) I also loved seeing your axolotl! I had no clue those could be pets! SO CUTE! So cool to see not only your journey there but also your amazing friends as well! It feels so normalizing in the best way. I wondered if you've ever considered a service animal for Tourette's before? I know there can be many obstacles there with waiting lists and sometimes personal reasons as well such as allergies or even expenses. And sometimes people decide they personally don't think a service animal would really increase their quality of life that much or that they could handle the responsibility of taking care of their animal partner. Anyway, long message, but thank you again for sharing your videos!!! Im excited and hopeful to see where your channel goes for the future!
You are a beautiful educator and your content is excellent. I’ve learned a lot from your videos. Thank you for your courage despite the toxicity you can often get by sharing on social media.
Thank you for breaking stigma and sharing your experiences
Hi Carly; I am very impressed by your persistence in talking about the real life of people with such a debilitating disorder called 'TOURETTES SYNDROME'. UNFORTUNATELY a lot of ignorance exists, when it comes to people who don't respect and understand what they say and do. They are the ones that really have a problem. I was teased all the time as a child with facial tics, and all I could do is take it as it comes. My mom taught me to think before I would speak, and that was one of the best things she ever said to me. Thank You for sending out such an important message. You are helping tens of thousands of people by being such an amazing advocate. Your friend Artie.
It's wild that anyone would say they want tourettes, it sounds like a super unpleasant experience!
I completely agree with you… yesterday I had a bad tic attack cause I went shopping and tried to mask and it was soooo bad at home . I don’t want to hit myself in the face… it has some times where its « cute and quirky » but it’s also « ouch yourself over and over again » I’m scared to hurt my loved ones
Thank u so much for your videos! You’re very charismatic! And also, thanks to you I learned a lot about Tourette’s. You are doing very important job and you do it well!
I don’t have Tourette’s, but I am disabled as well. I can relate to a lot of your struggles and I know how horribly it can interfere with your life and mental health. I think you’re incredibly courageous for speaking up about something that has affected you so deeply and personally. Thank you for all that you do. I look forward to better understanding this condition through your channel.
Btw, do you have any other platforms where you post different content? Not trying to be creepy or dismiss what you do here, I just know that you do still have a life outside of your disability and it would be cool to get to see that.
Hey! Thank you for your comment. I actually have a music UA-cam channel called “Carly K Music” where I post thing unrelated to my Tourette’s!
I just can't understand why anyone would even ask you those questions...i watch to learn and feel for you because of what u go through. Much love girl❤❤❤
I want to commend you for posting this video. It’s extremely helpful. I think my nine-year-old may possibly be having tics and I as a mother I Am extremely grateful for this video. I have not taken her to the doctor or anything because I wasn’t sure and have only noticed recently within the last couple of months. And I actually came upon one of your videos randomly in my feed and just found this video from scrolling on your channel. My daughter does this thing where she puts her head back and sometimes she does it three times in a row and sometimes she only does it once. And she doesn’t do it all the time. And while I don’t tell her to stop, I just tell her to relax and take her time. Because I thought it was like nervous or anxious type of reaction. I hope that makes sense. And she does tell me that she doesn’t do it on purpose. And now I feel like an idiot. Because I don’t want her to feel like she’s doing something wrong. I think I will definitely be calling her pediatrician. I thank you so much. You really helped me and opened my eyes. You’re very beautiful and courageous young woman, and you have helped this mama out. 💜
I subscribed to your channel because I want to learn more about Tourette’s, and you’ve taught me so much already. Remember, you’re loved and accepted just as you are.
🥰🥰
hi! thank you for this video :) i recently got a new tic today where i say “why are you blue?” whenever i see a certain shade of blue. its super annoying and i get a lot of comments about it. Im so grateful you made this video to provide education!
This is such an interesting and fascinating disorder(?) and i like watching your videos because they actually educate me about this, so i thank you!
Hi! Spring greetings from Finland! Thank you for educating us. Touretts is something I don't know much, but I want to learn 👍
You’re beautiful inside and out. I truly admire your strength and grace.
Love your lipstick!!!!
You are absolutely more than just your struggle with Tourette's! And now you are turning that into a positive by using your experience and knowledge to educate others and raise awareness.
I would love to see videos about you hobbies in music and art and anything else! The rest of the amazing things that make up Carly! 😊
Thank you so much!!! ❤️ Sending you love
I knew very little about tics before watching your videos and I can say you are a very brave strong woman to come out and say hey this is what bothers you. And also talking about your disorder. I have mental illness. Not numerological diagnoses and I can say its absolutely exhausting as well (I'm not comparing). Thank you so much for your authenticity. Keep up with the education. You're awesome. Numerological? Lol neurological **
Thanks for your support 💜💜💜
I first person i told or second person i told that I trusted said i was possessed and to stop and she never spoke to me after that again
I’m really sorry that happened to you! She sounds like an unhealthy person to have in your life. There are people who you will meet who will be excepting and kind. I wish you all the best!
On the fifth thing on this video was the biggest mood swing ever I went from “that’s interesting “ to “oh my god yours ankles bleed because of tics!” hope that doesn’t happen often.
Thank you as always for the education. I’ve never met anyone with Tourette Syndrome, but thanks to you, I‘ll be so much more prepared should that day ever come.
Keep up the great and invaluable work, and greetings from Japan!🇯🇵🎌
I laughed out of tiredness for you when you said "I don't have rice" I get that... I have the vocal tic "hello" and I will say hello to no one all day long
congrats on 10k!
Thank you! 🥰
Thanks for this video, really interesting and helpful x
Hi! Thank you for your informative videos.
Thank you for this video and your channel, Carly. You've taught me a lot. I hope you're doing well.
Thank you for your support!!
Hiiii Carly… just saying hi for a comment for your engagement because your channel is very underrated and I feel like you give an actual definition of Tourette’s. It’s not fun and games for you you don’t laugh after your texts like some people to I see on TickTock which some of it I feel like it’s fake when they’re laughing after their text. I mean I don’t have Tourette’s but I am assuming most people with Tourette’s syndrome don’t laugh after their texts because it’s painful and embarrassing but I’m sure that there are people with real Tourette’s that too sometimes maybe laugh afterwards I don’t know but your Channel definitely does raise awareness
One of my tics make me punch random stuff, it’s impulsive..
Now imagine going up to someone and saying.. “did you just punch metal and break your hand for attention.”
I’m autistic and I’ve been called “diseased” and “r**arded* so many times. It’s disgusting how people treat others just for being a bit unusual.
My least favorite as a disabled person is the “well, you don’t look disabled” or “I don’t even see you as disabled.” Uh??? What does disabled look like to you?????
it’s like, do you want me to be in a wheelchair? have a cane? possibly un-needed service animal? what would make you classify me as disabled?
It’s not fair to people with Tourette’s because they can’t escape it. But people who don’t have it wish that they could have it because its fun. But wouldn’t it be fun to NOT have it? It looks exhausting. If you are making video’s that are painful to you more often than not, get some rest! I feel bad watching these video’s of you suppressing yourself. You are amazing! And being a UA-camr with Tourette’s, you are doing an amazing job.
Nice video, very helpful :3
WARNING: this is a bit of a vent, nothing serious, just some self doubty thoughts
i get a HUGE amount of impostor syndrome from people at my work saying like 'oh, but you weren't ticcing at THIS time' and 'youre not ticcing right now' and 'i hardly ever see you ticcing' and 'do you even have tourettes?'
i work in early childcare, and while i do still gets tics and urges at work, you always have to be SO focussed on the kids because if you look away for even a second someone's going to be doing something potentially dangerous or something they shouldn't be doing. so for me, because of the very high level of concentration i apply at work, i tic much less to not at all sometimes, and i also dont really notice when i DO tic because its not at all in my mind. my tics are also usually predominantly motor, eye and muscle tics, so theyre less noticiable.
its gotten to the point sometimes where ill just lie in bed in the evening and tell myself 'youre faking, just... stop. just stop moving, you know you can do it, nothing youre doing is real'. then ill try to supress and tell myself my urges are all in my head, even though its uncomfortable, and when i do finally let the tics out, i feel even MORE like im faking even though ive been diagnosed for nearly three years and have been having tics since i was around 7 years old (at least ones i can remember).
please dont tell people theyre faking or imply that you think they are, it sucks
I just recently discovered your videos and I love how informative they are. I do have a couple questions. How are you able to redirect your tics? Does that make you uncomfortable like holding them in does? And I've heard that marijuana or just CBD oil can help with tourettes. Have you ever tried either of those, and if so, did it help you?
here's a video idea: when did some of your tics first appear? like is there a story behind the "i got rice" tic? are there any "secret" tics that you intentionally suppress for even for your youtube videos? i dunno, maybe talking about it would trigger your tics too much, so if you'd rather not, that's understandable.
honestly, i'm not sure if it's even okay to ask/suggest this sort of stuff, so apologies in advance if that's totally rude; i don't mean to be. i just really enjoy your videos, they're very informative.
Thank you for the ideas!!!
I developed jerky movements resembling tics due to medication and I came to compare it to others almost like sneezing, it CAN be suppressed but you wouldn't want to in a normal situation it kind of hurts if you do try to suppress it and also you can tell in your body it's coming but that will not make it any less urgent.
Sneezing is a good analogy for sure!
This is the first time I've said this out loud, but since learning about Tourette's and watching you and some other creators with it, I've started wondering if I have a very mild case of it.
I've done these small weird things ever since I can remember. One was that I'd shake my head sharply and it was really painful and would sometimes repeat, and I just couldn't help it even when my parents told me to stop. This went away in my childhood though.
Another one I still have is a twitch and blink of my right eye, people started commenting on it and it made me really self-conscious but I couldn't stop that either. Then I make this weird subtle throat sound, I can't really explain it. One was that I'd pinch my nose. I also feel an urge come on like you've talked about and thinking about them makes them worse.
They've been mostly pretty harmless and subtle, people have always commented on them but I do them even when I'm alone. I don't do anything vocal though.
I'm 23 now and I don't know if it could be a mild case of Tourette's or am I just weird? Can tics be so subtle? And can you have it without vocal tics? I feel bad asking about this, because I don't want to minimise the struggle of anyone who's been diagnosed with it, this hasn't impacted my life other than making me embarrassed sometimes. It doesn't put me in danger or anything. What do you think, could it be?
There are a couple of disorders that manifest tics. Tourette’s is just one of them. I would absolutely talk to your doctor about it. If your doctor can’t/won’t help you get a referral to a psychiatrist. It’s better to know for sure.
Thank u for the list
I recently started watching your videos and it's very interesting to learn about TS with you. I'm not sure if you already talked about this or even if it's an impolite question (if it is, I'm really sorry), but I would like to know if you always remember the tics you do. I mean, have anyone ever told you "you just did that" and you couldn't remember. Well, my question is if there are levels of how conscious you are depending on the tic you have. It seems to me that you are always aware, but I'm not sure. I really hope I could express myself in English without being rude. Hugs from Brazil!
That’s a good question! A lot of the time I won’t remember a tic I just did because they feel so natural to me. For example, I used to have severe blinking tics that I didn’t notice at all - my mom was the one that pointed it out to me and was like “why are you doing that?”
Hey I was wondering do you have something that can protect your back so you don't hurt yourself when you hit your back with your motor tics?
If vocal tics seem to be random phrases, I wonder if sweary tics are just the random probability of words to be said. If your tic is a word, there's a finite number of words, why not swear words. This isn't an important point, I just wonder.
9:32 omg this reminds me of those “dark subliminals” that are literally like “listen to this to get Tourette’s! :)” which is just absolutely unhinged imo. Those need to be banned tbh
I don’t have TS but I do have epilepsy that presents in a similar way and I’d fucking lose it if someone was like “god I wish I was epileptic”. Idk if this holds for TS, but I get asked a lot of questions about masking, dating, and sex. Idk, some of the questions are fine and I’m happy to answer them but asking me what sex is like with epilepsy?? Or asking me if my last relationship ended because of my epilepsy? Really?? Like do you normally ask strangers about their sex life and relationship history??
I actually made a video about those subliminals - so messed up!!
The literal translation of coprolalia is "shit talk." 😅
When I was Barely finding out that I Had Tourettes, A Girl Called it ''Cute'' When I had Vocal Tics. Idk I just found it offensive
I have TMS treatment (trans magnetic stimulation) for my mental health conditions which works to fire neurones in my brain so that it lessens my anxiety and depression. It would be really interesting if they did a study on whether this could improve tic’s (my depression and anxiety don’t go away but are improved). Just an interesting thought.
i don’t have tourette’s but i have severe trauma based anxiety and possibly adhd but something in there causes me to have tics and somethings i hate being told/asked as someone with tics is.
1. “hey stop punching yourself that probably hurts!” yeah no shit it hurts i know that once i had a really bad day where i was ticcing so often i was developing bruises so my friend had to try and restrain my hands to ice my chest and head it hurts so bad but not even their restraints helped it only made my tics worse
2 “hah why do you say? that that’s so funny” well no i don’t think it’s funny this hurts a lot and saying f- off or uh oh squeaking groaning it’s not fun at all
“awww that one was so cute” please stop- it’s so disrespectful and degrading to call this thing that has such a negative toll cute
“are you sure your not copying your friend i mean they also have tics right?” yes they have tics but ours are different aside from a few and we’re constantly setting eachother off magen we tic it’s not fun
My mother's cousin dealt with the swearing thing
And there was this one time I was in the Er for migranes
I was ticking and the nurse caught on to it and asked if I swore
My mom was mad because the lady was almost imitating it
Also my worst tic is probably head jerks or sodium chloride
after listening to this, I do want to ask if it would be considered offensive or improper as someone without Tourette's to write a character that does live with the disorder. naturally I would want to do an insane amount of research on it and talk to folks like you who do live with the disorder about how to properly demonstrate it and not just make it a "fun character quirk" but as something that has made them who they are because they've needed to find ways to live with it -- much like your "sneaky" suppression, and other coping methods you and others have found useful. I just wonder if that's something people would want to see more representation of?
How did you get the tic “I got rice”?
I've seen some of the negative affects. It's awful. I've watched a tic attack and I cried. I felt so bad. I wished I could've done something to help.
another thing I'd imagine folks such as yourself don't appreciate is when people say "your tics are cute." I have had people say ro me "it's cute that you just pass out randomly" and it's so irritating because it's like they don't care how frustrating and debilitating the symptom is.
I have no doubt that if I had Tourette's I'd be swearing like a sailor. Not because it's a tic but because Tourette's looks exhausting and I swear when I'm stressed out or happy or bored or...
“I dont have rice” lmfao
😂😂😂
For me it feels like I’m seriously trying to crawl out of my skin. It’s an awful, frustrating sensation where you really, really do feel like you’re losing your mind. It’s not fun. It’s so embarrassing because it likes happening right in front of people. Plus, my back and neck are so strained and sore because that’s where it happens most of the time. I don’t Know how else to describe the sensation. Wigged out?
I have tics and i still havent seen a doctor about it cause my tics are getting worse and ive been developing new ones and one of the tics i developed is saying f*** off and i normally get stared at in public
Hey carly! would it be okay if i made an oc with tourettes to spread awareness or would it be really rude to people who actually have tics, if it is rude i wont make an oc with tics(i was just wondering)
So for me personally,
While yes our tourette's is a large source of anxiety and frustration (especially with tic Storms (our word for mild-moderate attacks)),
We and many of our friends have found that our depression episodes and a lack of tics are correlated. (Chicken or egg, can't be certain)
A few days or even a week or two without ticcing is usually fine.
But if we've been on minimal tics for several weeks, it's either a cause of, or because of, a lot of depressive symptoms.
(Just me personally, I use plural pronouns because DID, we love a comorbid bitch in this household)
///
Psa: We're also trying to get screened for Bipolar Disorder (unspecified) and we've been medically gaslit our entire lives about "You don't have Tourettes, you just have unmedicated ADHD UwU".
We've been in combat about getting diagnosed and appropriately medicated for over 6 years now.
Hang in there and find someone who will fight for you.
Much love ❤
Carly I read about a guy who had brain surgery because of his really extreme from of tourettes. You probably know better than me how this surgery is done.
But because not everyone has the same tics, is it because of the brain what part the neurons don't work like they should, or does it affect all neurons? Beside being a very dangerous surgery, is it possible that it only helps just in certain cases or just for mechanical tics.
I would love to see a video of your opinion on that.
i started ticcing 2 months ago, already developed 3 tics and sometimes it hurts
i have pdd-nos (autism)
i dont really know what it is and what is causing my tics
is it possible to have tourettes in my case? and what do you think about it?
I have ADHD, so I "wiggle" or move part of me all the time. So I am very empathetic? Sympathetic? To others who have disorders. I love love love your vids, btw
Ironically I’m here from a collab you did with someone where you were fakeclaiming a third party 😂 this is my first day on this side of UA-cam (never watched any videos to do with Tourette’s before) so it’s a little weird I suppose but I can’t tell between fakers and real sufferers so idk
Is it bad if you ask if a person is suppressing the tics ? And is it kind to say that you don’t need to suppress?
I actually really want to know your hobbies 😍 are you a creative person? ❤️
I hope you don't mind my asking, but how are individual tics developed? Do they happen randomly or could they be caused by repeating a certain phrase or action?
Telling a person with TS to stop ticcing is like telling an allergy sufferer to stop sneezing. It would be so unfair.
Hey, so I just wanted to let you know that the part of the video where you said that we have an urge is not completely correct. I have professionally diagnosed Tourette’s syndrome and I do not feel the urge to tic unless I am in a tic attack. (Sorry if that sounded rude, I didn’t mean to!)
Wall of text incoming for potential readers. Just and FYI.
Oh, my gosh. I can't understand ANYONE who genuinely wants any sort of disorder. "Oh, Tourette's looks like fun!" Are you _kidding_ me?!?! "Yeah, it's so much fun! You should start a free trial of EPILEPSY!" I can't believe there are people who GENUINELY think this.
I don't have Tourette's. I do, however, have a number of autoimmune disorders, the primary one being Sjögren's syndrome. Lemme see if I can remember EVERY diagnosis I have.
Mental illness:
- depression, likely major depressive disorder
- generalized anxiety/panic disorder
- attention deficit disorder (ADD)
- likely adult female high-masking autism disorder (undiagnosed, but I have nearly all the symptoms)
Endocrine:
- polycystic ovarian syndrome (PCOS, now well controlled) with some insulin resistance
- pelvic congestion syndrome (now well controlled)
Autoimmune:
- Sjögren's syndrome (primary, most likely)
- fibromyalgia, with myoclonus
- chronic fatigue syndrome
- gastro-esophageal reflux disease (GERD)
- interstitial cystitis (IC, painful bladder syndrome)
- costochondritis
- chronic constipation
Just a note, while every diagnosis listed below Sjögren's syndrome can be a standalone diagnosis and disorder (except maybe chronic constipation), all of these are essential just _symptoms_ of Sjögren's syndrome and not separate diagnoses, to _me._ Clinically speaking, they're all separate but _comorbid_ disorders, in that they're co-occurring with Sjögren's syndrome.
I am not posting all that information for pity, attention, or likes, but to illustrate 1, how genetic and autoimmune disorders don't just come with one disease and its symptoms, but they bring their whole family with them. 2, this is personal background for having the TREMENDOUS right to say how disgusting it is for people to fake ANY disorder, much more to actually WANT one.
I've learned to live with and overcome my mental disorders, as best as I'm able. However, when dealing with chronic pain, it's much harder to treat pain with the ease you can treat unipolar depression and anxiety, as well as things like GERD and even PCOS. I'm in severe pain a lot, and I understand the exhaustion Tourette's takes on you because of that. I haven't been able to work or go to school since 2012. It's awful.
I just... you've actually had people say to you that they WANT Tourette's???? I absolutely cannot wrap my brain around that. I just listed the crap that's a constant affliction of my daily life, so that said: people who WANT some disorder like Tourette's or fibromyalgia, do you want to feel more exhausted than the average person every day, even having actively done nothing to cause such exhaustion? Do you want to sleep poorly at night? Do you want to go to bed sober, and wake up so drunk you can't even make coffee or tea for a whole hour? Do you want to go out with your friends like you usually do on a Saturday night, but then have to leave after 30 minutes, not having even consumed your first drink, because you're in too much pain? Do you want your friends to stop inviting you to do things because you're now unemployed, without disability income, because they always want to go out to eat/go to the club/only do something that involves spending money? Do you want them to ask you when you'll get better, even though seconds before you just mentioned it's a CHRONIC illness? Do you want to hear them ask you, Oh, what's your disorder do? only for them to get distracted by someone else getting their attention, and promptly forget about you or the conversation you were just having? Do you want to lose your entire social circle? Do you want judging, hypocritical assholes to call you lazy when you're _physically incapable_ of doing once effortless chores now? Do you want to be in so much pain, so tired, so depressed, so _miserable_ that you don't want to do ANYTHING fun anymore, even a low-energy hobby that kept your soul alive in the toughest times?
Then by all means, go and deliberately infect yourself with something like cytomegalovirus or Epstein-Barr. Go eat tainted beef of animals who had mad cow disease. Go live in a toxic waste dump and get _cancer._
Go on and enjoy the complete destruction of your life.
Thank you, Carly, for the excellent video. Anything I can do to help someone else with a genetic disorder or autoimmune disease, in whatever small way I can, I want to learn and do. I'll treasure up all these things in mind with Tourette's.
I was diagnosed with Idiopathic Hypersomnia with long sleep cycles about 13 years ago, but I've lived with it my entire life. I rarely did sleep overs as a kid, because I was always in bed and asleep long before any of my friends would be. As a kid, I was always asleep more than I was ever awake; according to my mother as an infant I scared the daylights out of her sleeping 22 hours in a row without a peep. She kept making sure I was breathing, but didn't know what to do otherwise. She ended up calling my pediatrician and he said, "If she's breathing, just let her sleep." 30 years later... I still had issues with staying awake for any length of time, no matter how much caffeine I drank, how many hours I slept the night before, no matter how many ephedrine I took... I still was exhausted ALL.THE.TIME.
The first time I fell asleep driving, I was 17. The cop was nice and followed me home to make sure I made it there safely. The second time I fell asleep while driving I was 21 and driving home from an amusement park... the rumble strips woke me up that time. I fell asleep while working on a truck and dropped a wrench on my face, almost busted my teeth. Then... people like my husband, who takes a long time to fall asleep and struggles to stay asleep will often say, "I wish I had your problem." NO YOU DON'T!!! Thank the lord and scientists for medications that actually work and are non-addictive!!!
Hey, Carly! I have a quick question for you! Well, two actually-
1. Is tics just in your head and torso, and can it be hands or feet?
2. Where did the “I got rice” tic come from? (I haven’t been here too long so if it was in a different video I haven’t seen it-)
I can answer number one. It can be practically anywhere. Not just head and torso. Almost anything can manifest as a tic.
@@squaft16 Thank you for the help! It’s greatly appreciated!
Yup! Tics can be anywhere - I have hand tics, leg tics, feet tics, finger tics, butt tics - honestly anything can present as a tic!! And honestly I have NO IDEA where “I got rice” came from 😂
@@TiccingTogether Thanks! Very helpful! Btw I LOVE your videos!
Sadly, my mom thinks all people with Tourette’s have a screaming tic and that is the only tic they have and she thinks you are faking! I still can’t tell her that she is wrong and you are the perfect example for someone with Tourette’s 😥😥
Oh same here, I totally get it. Stay strong!