Having tics is so difficult for me as well. People want it and I will gladly give it away. I want to be able to move for myself not the issue in my brain. I am 13 years old, and it is hard for me to deal with as a child. I am lucky to be able to have this in a time when people know what it is, however, people also know that other people are faking it, and this makes it hard for people to believe me. Also, because my tics don't look cute or desirable to other people, people think that it means I don't have them at all. I wish people were educated on the fact that tics can actually be uncomfortable looking and weird. I am happy to see your tics because it reminds me that there are people out there with tics that don't look pretty and ones that look similar to mine. Thank you so much for sharing your tics with us because it helps us understand what they really look like.
I remember years ago, back when MTV’s True Life was popular, there was a girl with Tourettes where one of her serious tics was that she would stop breathing and her family or friends would have to physically make her breathe. It blows my mind that people nowadays want to fake a disorder that can cause PHYSICAL HARM
I agree with this, i twitch when I'm sleeping my Twitches get worse when I'm angry and I've been told by my School counselor that it's tics and it's phase 1 so yea when I see these things it's just makes me sick because I have a friend who has tourettes and is suffering so much because of it so yea it's not a trend and stuff
I found your videos when I was watching videos exposing ticsandroses, and I want to say Thankyou for making your videos and sharing your experience, you are always so sweet and kind with your approach and so informative too, I don't have tourettes and I don't understand why anyone would fake it because anyone can see that it's painful and intrusive for you, i really admire your strength and spirit.
I do not have Tourette’s but I do have my best friends son who has Tourette’s and the way he describes it is an Itch that he can’t scratch unless he ticks… and I’ve always felt bad for him because I’ve known him since a little boy and now he’s 20 years old but I’ve seen how hard he takes sometimes and I just feel awful for him so for people that are faking it for clout or for views and think they’re cute and they’re mostly women and girls that do it which is odd because they think they’re cute and quirky it’s so messed up and it makes a mockery of people who really have this disorder
I recently turned 29 and have had a constant battle with alcohol since about 14. It took a hold of me and still has a firm grip on me. It's my enemy and my friend. I hate it. But it's my medication that's hurting me. In the hour I'm sober after waking up I desperately seek a can, just to get normal. I can have 6 cans and nobody would realise. Drinking everyday for around 10 years shows just how much you can be trapped. I don't know what went wrong, but I pine for my childhood. I don't want to hurt people. It's destroying me, yet I can't break away. Doubt I ever will. Being an alcoholic means everything seems impossible. People joke and laugh, and yeah, sometimes it's funny. But when I go to bed and pull the covers over me, I feel ashamed. I'm genuinely scared of the future. I don't mean to be dramatic but I sometimes I resent my parents for having me. But I still love them with all my heart. Sorry for the rant.
I don't have tourettes so I don't know what it's like but I can understand the frustration with all the people faking disorders on TikTok because I have ADHD and they're doing the same with ADHD. ADHD is a bit different since it's a neurodevelopmental disorder, so I really don't know how much my ADHD influences my personality and stuff since it's literally always been there and it's not all bad. But when all these people on TikTok fake ADHD, I end up hearing more and more people discredit ADHDers , saying it's "over diagnosed" and "not a big deal" when it literally affects every single aspect of my life. ADHD is like having a large puppy and you're not holding the leash (unless you're taking meds). You try desperately to get the dog to go where you want to go but it keeps going off in other directions or sometimes refuses to move at all. And when you end up being late as a result or not getting something accomplished, people think you're lazy or selfish or that you just don't care at all. These people on TikTok make it that much harder to be believed when we ask for accomodations.
Honestly, as a person who is friends of many who suffer from tourettes, this is not a joke. Tourettes are not quirky, cute, or funny. Those people who fake it, are just mentally unwell. It’s not something to joke or laugh about, this is a diagnosed illness and honestly, my love goes out to those who suffer with tourette syndrome, they have to cope with so much until death. It’s so scary to think about, so for those who keep, thinking its really cool, funny, quirky etc, stop this. It’s a sick act.
I was diagnosed bipolar type 1 two years ago, and I felt really annoyed at some Tik tok trends that were like "manic phase - check out my new hair" as if it was quirky and cute to be manic. Mania can seriously destroy your life... using a disability for vanity is glamorizing it which is wrong. Thank you for keeping it real and driving the point home that disability is not glamorous!
Jeez, I didn't know. I'm also bipolar. Glad I don't go on Tiktok, sounds like the perfect breeding ground for the worst of humanity. All my experiences of mania are that it really fucking sucks.
I can honestly say that I'm disgusted by those who claim that Tourettes is a trend when in reality it isn't. If there was a class on teaching about Tourettes and why it isn't fun to deal with nor should it ever be mocked, you would qualify as the number one teacher for that class. Under no circumstances will I EVER mock Tourettes because that is not how I roll. I've seen the struggles of living with Tourettes and why no one should ever desire to have it. Keep up the good work Carly.
Literally just discovered your channel, and I'm so glad. My tics peaked at age 12 but I couldn't afford a diagnosis until 24. Thank you for not editing out your facial tics. I have used the same metaphor of a puppet to describe the sensation before. I see a lot of you in myself and you've inspired me to share my story more ❤ Edit: Reached the end of the video & I relate SOOO much to the idea of there being an insatiable urge, so your muscles arch and tense in the weirdest ways, trying to find that tic and relief. Sad for you, but happy to feel less alone.
You seem to have better ideas for videos than I do XD. I plan on posting what it is like having TS at an external store. Maybe if I can I'll post something like this one soon as well. Stay safe and tic on :)
i honestly don’t understand why people think faking a neurological disorder is “cute” or “quirky” because it’s a really big pain, as someone who has tics i really wish i didn’t have them, and if i could would immediately take away. i’m in the process of getting my tics looked at to see if it’s a disorder or stems from a different diagnosis and i’m very grateful for my parents for being as supportive as they are. but back to the point, tics aren’t cute and they’re physically and mentally exhausting to suppress. so what i’m trying to say is, i really appreciate your videos and hope you can bring forward to light the people who are faking and help them understand that it’s not cool to have a disorder. have a good day if you see this :]
I loved the analogy you used. Paints a great picture of how it’s like when you aren’t sure or aware. My dad is a neurologist and is often angered by people online faking Tourette’s. We had a conversation about this a few days ago actually. We can’t really make sense of why anyone would want a disorder like this. My only guess was attention on media and fame. If that is truly the case then that’s just horrid. I mean all of it is horrible. I don’t understand why people are putting light on this
My buddy has neuropathy and got a script for Lipitor, which _very basically_ inhibits the electrical charge of your brain. Less interactions = less pain. However this med gave him very bad thoughts, so he went back to the doctor 3x and she merely upped his dosage. I got him on medical marijuana and he feels better than ever with zero bad thoughts. - People who fake chronic illnesses are empty on the inside and desperate to be acknowledged. They are in their own reality and extremely depressed but would never admit it.
You are a very brave person to show the good and the bad. I would be curious to know how this became something fun for people to do. I know we probably never will, but it would be interesting 🧐
I have a question since I'm early enough for you to see my comment. What was it like when you first got your vocal tics? I don't have Tourette's but I am diagnosed with a motor tic disorder and I'm worried about gaining a vocal tic.
In MY personal experience, if you are not diagnosed with TS, then I wouldn't necessarily worry about that. It was only about 6 months ago that I gained a WHOLE bunch of vocal tics, but I had TS for over 7 years. I never really thought I would gain vocal tics much because they never occurred until recently. But there are ways for those without TS to reverse the tic either into a preferable vocal tic, or a new motor tic. It is also possible to get rid of that tic altogether if it is early enough.
I can't "watch" your videos sometimes I listen cause my tics react... like this one... But THIS CONTENT is Important. I have those ... hold down memories too. In the late 80s and early 90s my tics were not called tics... I was called a spaz, punished and restrained by more than just my parents involuntarily. Child abuse and medical neglect has led me down a unusual path to identifying my puppetry and false electronics systems in my brain and turns out genetically also my body. Systemic Mastocytosis is a real mind bender- autoimmune disease when my body attacks itself with histamine- so I'm allergic to myself. Then dysautonomia- so my body doesn't perform autonomic functions like breathing, bp, and heat control properly 😑 . My point being I'm all backward and inside out and I have no control over any part of my body or brain, I'm pure human puppet. It's insanity, isolating, stigmatizing and not in the least "cute." When I first started seeing "tic content" I was like ... hey maybe I'm not so rare and alone... and then😳😱🥺 it's made every doctor appointment for my life threatening conditions so much harder. This is impossible and because of one of my conditions EDS making me look super young - like a good 20yrs younger for real- I'm 38 I get mistaken for gen y/z often 🙄 The "tik tok tics trend" is harmful on so many levels and to so many more people. The "victim" trope is In style, the struggle has always been a very American thing to stylize- soooo someone somewhere tics something a normi finds cute and it's presented as such and not as the disorder- meme created- internet fuel added and wallah-Just as you said- there needs to be more hard truth videos put out by these creators that "claim" to be afflicted.
I have tics Dont know where it came from Just a normal evening I move my head to the left It kept going Couldn't stop it Kept going It was so annoying 2 a 3 months later Got a blinking and whistling tic So annoying My friend asked why i was wistling I just answered idk BEC IDK
Your channel is gentle and kind and before watching this video your singing video was my favourite. This one, whilst being sad, speaks to your bravery. It takes a lot of courage for a young person to open themselves up and leave themselves vulnerable to the internet the way you did. We all know what an obnoxious entity the internet can be. No one is brave because they have a disability, it’s how they handle that disability. I talk to at least 20 disabled people every workday but there’s a select few as strong as you. I’m lucky enough to be married to one of those select few. I hope they make further discoveries around the operations that can help some of those affected with the more extreme types of Tourette’s, and reducing the side effects.
Wow are they postcards or is it wallpaper behind you? Either way it’s beautiful. I can not imagine how hard it would have been for you as a 12 year old to be diagnosed with a lifelong condition/illness/syndrome/monster/disorder ( whatever term you feel suits it best). You must be fuming at the new ‘trend’ , I surely am and I don’t have Tourette’s. You are an amazing young lady from what I have seen and you should be proud of how you are educating us on all aspects of this disorder xx also ( as someone from the U.K.) I think you have a super lovely, soothing tone to your voice x
I have not even been diagnosed, But I have experienced these tics for a year and a few months, experiencing both physical and weird noises. But I think I don't have to be diagnosed to know tics can be very embarrassing and make you want to distance yourself, so you don't burden others, even if they say it doesn't bother them. Or when dealing with physical tics the constant fear of hitting yourself or others without control. Is like a very own personal hell. Yes, they can be funny sometimes, but that's very rare in between the pain of one's body clenching, contorting, or unstoppable noises that make your voice sore, or even tics that stop your breath for a second. I again have not been dealing with this for as long as you but I do know Tics are not a quirky character, it's a battle. And to be able to find comfort and find I'm not alone in my battle makes the weight a bit lighter. Thank you for your channel and your voice to help people with Tourettes.
Your puppeteer analogy is vivid and it shows you have great awareness of your own cognitive levels and layers. I wonder if there is a way to gain control of the puppeteer?
I appreciate your videos. I don't understand these people that fake disorders or even mental illness. Something one does not wish for. My son with autism stims alot but now I think he might have tourettes. If someone can tell me the difference between stiming and ticcing. I like to talk to real people that have it or parents that have a child with the disorder. I don't care for doctors for I feel they absolutely offer nothing. I've added you to my prayers. You are a sweet young woman and I pray for the best for you.
I really love how you approach your condition with empathy in the sense you're sharing raw emotion and that can be so hard because it's so vulnerable, but I hope that your strength to do that helps others become more aware of what this condition really looks like for those who suffer from it. Not being in control of your body is terrifying, so it makes sense you see it as a monster. I think this was such an important analogy, especially the puppeteer, because that illustrates your experience so viscerally. Personally, I would appreciate seeing videos about your daily life and how you manage your condition. People can easily take for granted what it's like to go to a restaurant and sit down and have a meal and drive home and spend hours running errands for themselves and not even consider there are people out there who live with conditions like yours and how it affects them when they need to do those tasks. It's exhausting and it can be hard to be independent because of that too, which people don't often realize. Thank you for making these videos! I hope your videos continue to spread light and awareness to others!!!
Geodon (an antipsychotic) can be a tough one but has really helped with not only my bipolar and BPD but also my stimming as a result of ADHD and Autism. Sadly cant relate to the having tourettes part. Just wanted to put my experience with antipsychotics out here :)
This is…so so relatable. I’ve had these stupid tics my whole life and it’s awful. It’s so so frustrating being out of control. For me, it feels like I Want to crawl out of my skin . It’s so uncomfortable, especially trying to suppress.
Thank you for being so honest and open about your Tourettes. The analogy about a puppet and a puppeteer makes perfect sense. I had only come across Tourettes as uncontrollable swearing, and it was portrayed as being 'funny' or 'quirky'. You've helped me realise that it's so much more complicated than that.
I feel so disgusted that people are making tourettes as a trend.. They really need some mental help.. As a person who have multiclorosis that tics when they feel angry, sad and excited and I think is some how similar to tourettes but I'm not sure since I'm still 16 and i don't know if their similar or not but yeah.. I just hope this tried will stop.. And tiktok themselves will take notice of this disgusting behaviour and put an end to it..
I have a question, I'm also on two antipsychotics but I don't seem to have any negative effects from them. You say it's hard for you to be on them, can you explain that a bit more? Only if you want of course xoxo
Tourettes isn’t a thing that you can choose to just stop. The tics can be suppressed but it takes a lot of focus and sometimes you can’t suppress them at all. I’ve had tics since I was 2 years old and it’s hard enough having the tics without being judged and being told you are faking
I hate what some people do when they fake tourettes or when they don't want to try to learn about it, one time I was leaving a room amd I was doing a few motor tic and one person put on a mask and said '6 feet away!! I dont want to get the tics!!' In a mocking high piched voice. I tryed telling them that tourettes is not contagious and they just ran away from me. Have a great day evreyone!❤
Day three of asking I don't know if I have torettes or Huntington's disease because sometimes ill tic\twitch and I'm confused. Can you possibly make a video on how to identify torettes? I'd really appreciate it! Have a good day and that you for these awareness videos aswell!
She's mentioned in a previous video that you can't tell if someone for sure has Tourette's. Also, there's no specific test for it either, so I would say your best bet is to talk to your GP (who may refer you to a specialist like a neurologist) or talking to a psychologist or psychiatrist. I am not 100% sure on this, but I believe this channel said she was diagnoised by a psychologist? But she was absolutely professionally diagnosed and works with professionals still I imagine so she can manage her condition and the medication for it. As for Huntington's, I'm pretty sure that's hereditary or largely hereditary and if i'm not mistaken there are specific tests along with family history medical professionals use to diagnose it. Which, again, I would say a GP should be able to point you in the direction you need to go. I would say if anything she may make a video specifically talking about her journey before and during the process of her diagnosis, specially talking about how that went for her, but not everyone with conditions like these feel comfortable telling someone else how to identify if they have the condition as well and may tell you to ask a professional instead.
TH-cam is not the place for internet diagnosis. Go see a doctor if you're worried. If you think you've got huntington's disease then definitely go to the doctor's; even more so if you have it in your family.
Only genetic testing can tell you if you have Huntington’s disease. I hope you don’t have either. She isn’t a doctor/neurologist so she wouldn’t be able to tell you anything anyway. Please see a doctor.
Hi I recently found your channel after learning its a trend to fake disorders on tiktok (i don't use the app). Which is so disgusting. If you dont mind me asking, how do medication help? Do the decrease the amount of tiks you may have?
Confront it strong lady. You are doing great work by educating people and being a role model for those who need it. My son is 12 and has been diagnosed with a lifelong genetic disorder that causes him much pain and he’s trying to accept that this is his reality. Unfortunately he got the disease from me and it scares him. So seeing videos like these, even though it’s technically not the same disorder, gives some measure of comfort and relatability. Thank you for your courage. So yes, confront it. You’re stronger than your diagnosis. You prove it with your videos and many of us are grateful. Vulnerability takes real courage. Virtual healing hugs. 🦋🌻🦋🌻🦋🌻
I really like the puppeteer analogy and I feel like using it in an art dedicated to Tourette’s. I love painting and have been considering making a series of painted depictions of mental and medical disorders in a way of raising awareness but not having more than mild anxiety, OCD, and PTSD I’m worried about unintentionally being insensitive with my depictions so I’m not sure if I will do it. Either way, thank you so much for sharing your experiences and feelings on the topic of Tourette’s.
Forgive me for lack of a better word.. but I find it "interesting" that singing song can stop the tics but talking doesn't. I appreciate your being open with us.. your awesome don't ever forget that.
I’d love to see a video of your tics if you’re willing to share. I’ve only been able to watch a few just recently. You mentioned “Jerry did it” was one (laughed at your uncle info when you mentioned!). If you could share ones that you started with, some that are the most satisfying (if there are ones that are more satisfying than others, not sure), and ones you’ve been able to laugh at once they’ve passed. Thanks for your content! Praying for you 🙏🏽
Having tics is so difficult for me as well. People want it and I will gladly give it away. I want to be able to move for myself not the issue in my brain. I am 13 years old, and it is hard for me to deal with as a child. I am lucky to be able to have this in a time when people know what it is, however, people also know that other people are faking it, and this makes it hard for people to believe me. Also, because my tics don't look cute or desirable to other people, people think that it means I don't have them at all. I wish people were educated on the fact that tics can actually be uncomfortable looking and weird. I am happy to see your tics because it reminds me that there are people out there with tics that don't look pretty and ones that look similar to mine. Thank you so much for sharing your tics with us because it helps us understand what they really look like.
You are a smart boy for your generation... Bless you.
Thank you so much for your video's I don't have this but I love to learn and I can't understand why anyone would want to fake it either 💜💙💜
I remember years ago, back when MTV’s True Life was popular, there was a girl with Tourettes where one of her serious tics was that she would stop breathing and her family or friends would have to physically make her breathe. It blows my mind that people nowadays want to fake a disorder that can cause PHYSICAL HARM
I agree with this, i twitch when I'm sleeping my Twitches get worse when I'm angry and I've been told by my School counselor that it's tics and it's phase 1 so yea when I see these things it's just makes me sick because I have a friend who has tourettes and is suffering so much because of it so yea it's not a trend and stuff
I don’t understand people who thinks its a joke. Keep up the good work Carly. 👍
I found your videos when I was watching videos exposing ticsandroses, and I want to say Thankyou for making your videos and sharing your experience, you are always so sweet and kind with your approach and so informative too, I don't have tourettes and I don't understand why anyone would fake it because anyone can see that it's painful and intrusive for you, i really admire your strength and spirit.
I do not have Tourette’s but I do have my best friends son who has Tourette’s and the way he describes it is an Itch that he can’t scratch unless he ticks… and I’ve always felt bad for him because I’ve known him since a little boy and now he’s 20 years old but I’ve seen how hard he takes sometimes and I just feel awful for him so for people that are faking it for clout or for views and think they’re cute and they’re mostly women and girls that do it which is odd because they think they’re cute and quirky it’s so messed up and it makes a mockery of people who really have this disorder
I recently turned 29 and have had a constant battle with alcohol since about 14. It took a hold of me and still has a firm grip on me.
It's my enemy and my friend. I hate it. But it's my medication that's hurting me.
In the hour I'm sober after waking up I desperately seek a can, just to get normal. I can have 6 cans and nobody would realise.
Drinking everyday for around 10 years shows just how much you can be trapped.
I don't know what went wrong, but I pine for my childhood.
I don't want to hurt people. It's destroying me, yet I can't break away. Doubt I ever will.
Being an alcoholic means everything seems impossible. People joke and laugh, and yeah, sometimes it's funny.
But when I go to bed and pull the covers over me, I feel ashamed.
I'm genuinely scared of the future.
I don't mean to be dramatic but I sometimes I resent my parents for having me. But I still love them with all my heart.
Sorry for the rant.
I don't have tourettes so I don't know what it's like but I can understand the frustration with all the people faking disorders on TikTok because I have ADHD and they're doing the same with ADHD. ADHD is a bit different since it's a neurodevelopmental disorder, so I really don't know how much my ADHD influences my personality and stuff since it's literally always been there and it's not all bad. But when all these people on TikTok fake ADHD, I end up hearing more and more people discredit ADHDers , saying it's "over diagnosed" and "not a big deal" when it literally affects every single aspect of my life. ADHD is like having a large puppy and you're not holding the leash (unless you're taking meds). You try desperately to get the dog to go where you want to go but it keeps going off in other directions or sometimes refuses to move at all. And when you end up being late as a result or not getting something accomplished, people think you're lazy or selfish or that you just don't care at all. These people on TikTok make it that much harder to be believed when we ask for accomodations.
Honestly, as a person who is friends of many who suffer from tourettes, this is not a joke. Tourettes are not quirky, cute, or funny. Those people who fake it, are just mentally unwell. It’s not something to joke or laugh about, this is a diagnosed illness and honestly, my love goes out to those who suffer with tourette syndrome, they have to cope with so much until death. It’s so scary to think about, so for those who keep, thinking its really cool, funny, quirky etc, stop this. It’s a sick act.
I was diagnosed bipolar type 1 two years ago, and I felt really annoyed at some Tik tok trends that were like "manic phase - check out my new hair" as if it was quirky and cute to be manic. Mania can seriously destroy your life... using a disability for vanity is glamorizing it which is wrong. Thank you for keeping it real and driving the point home that disability is not glamorous!
Jeez, I didn't know. I'm also bipolar. Glad I don't go on Tiktok, sounds like the perfect breeding ground for the worst of humanity. All my experiences of mania are that it really fucking sucks.
I can honestly say that I'm disgusted by those who claim that Tourettes is a trend when in reality it isn't. If there was a class on teaching about Tourettes and why it isn't fun to deal with nor should it ever be mocked, you would qualify as the number one teacher for that class. Under no circumstances will I EVER mock Tourettes because that is not how I roll. I've seen the struggles of living with Tourettes and why no one should ever desire to have it. Keep up the good work Carly.
Literally just discovered your channel, and I'm so glad. My tics peaked at age 12 but I couldn't afford a diagnosis until 24. Thank you for not editing out your facial tics. I have used the same metaphor of a puppet to describe the sensation before. I see a lot of you in myself and you've inspired me to share my story more ❤
Edit: Reached the end of the video & I relate SOOO much to the idea of there being an insatiable urge, so your muscles arch and tense in the weirdest ways, trying to find that tic and relief. Sad for you, but happy to feel less alone.
You seem to have better ideas for videos than I do XD. I plan on posting what it is like having TS at an external store. Maybe if I can I'll post something like this one soon as well.
Stay safe and tic on :)
i honestly don’t understand why people think faking a neurological disorder is “cute” or “quirky” because it’s a really big pain, as someone who has tics i really wish i didn’t have them, and if i could would immediately take away. i’m in the process of getting my tics looked at to see if it’s a disorder or stems from a different diagnosis and i’m very grateful for my parents for being as supportive as they are. but back to the point, tics aren’t cute and they’re physically and mentally exhausting to suppress. so what i’m trying to say is, i really appreciate your videos and hope you can bring forward to light the people who are faking and help them understand that it’s not cool to have a disorder.
have a good day if you see this :]
i feel like i should mention, i am 13, so what you’re saying hits close to home, tics are my monster, and i wish they could just go away.
I loved the analogy you used. Paints a great picture of how it’s like when you aren’t sure or aware.
My dad is a neurologist and is often angered by people online faking Tourette’s. We had a conversation about this a few days ago actually. We can’t really make sense of why anyone would want a disorder like this. My only guess was attention on media and fame. If that is truly the case then that’s just horrid. I mean all of it is horrible. I don’t understand why people are putting light on this
My buddy has neuropathy and got a script for Lipitor, which _very basically_ inhibits the electrical charge of your brain. Less interactions = less pain.
However this med gave him very bad thoughts, so he went back to the doctor 3x and she merely upped his dosage.
I got him on medical marijuana and he feels better than ever with zero bad thoughts.
- People who fake chronic illnesses are empty on the inside and desperate to be acknowledged. They are in their own reality and extremely depressed but would never admit it.
You are a very brave person to show the good and the bad. I would be curious to know how this became something fun for people to do. I know we probably never will, but it would be interesting 🧐
I have a question since I'm early enough for you to see my comment. What was it like when you first got your vocal tics? I don't have Tourette's but I am diagnosed with a motor tic disorder and I'm worried about gaining a vocal tic.
In MY personal experience, if you are not diagnosed with TS, then I wouldn't necessarily worry about that. It was only about 6 months ago that I gained a WHOLE bunch of vocal tics, but I had TS for over 7 years. I never really thought I would gain vocal tics much because they never occurred until recently. But there are ways for those without TS to reverse the tic either into a preferable vocal tic, or a new motor tic. It is also possible to get rid of that tic altogether if it is early enough.
I can't "watch" your videos sometimes I listen cause my tics react... like this one... But THIS CONTENT is Important. I have those ... hold down memories too. In the late 80s and early 90s my tics were not called tics... I was called a spaz, punished and restrained by more than just my parents involuntarily. Child abuse and medical neglect has led me down a unusual path to identifying my puppetry and false electronics systems in my brain and turns out genetically also my body. Systemic Mastocytosis is a real mind bender- autoimmune disease when my body attacks itself with histamine- so I'm allergic to myself. Then dysautonomia- so my body doesn't perform autonomic functions like breathing, bp, and heat control properly 😑 . My point being I'm all backward and inside out and I have no control over any part of my body or brain, I'm pure human puppet. It's insanity, isolating, stigmatizing and not in the least "cute." When I first started seeing "tic content" I was like ... hey maybe I'm not so rare and alone... and then😳😱🥺 it's made every doctor appointment for my life threatening conditions so much harder. This is impossible and because of one of my conditions EDS making me look super young - like a good 20yrs younger for real- I'm 38 I get mistaken for gen y/z often 🙄 The "tik tok tics trend" is harmful on so many levels and to so many more people. The "victim" trope is In style, the struggle has always been a very American thing to stylize- soooo someone somewhere tics something a normi finds cute and it's presented as such and not as the disorder- meme created- internet fuel added and wallah-Just as you said- there needs to be more hard truth videos put out by these creators that "claim" to be afflicted.
thank you so much for sharing your thoughts and experiences
I have tics
Dont know where it came from
Just a normal evening
I move my head to the left
It kept going
Couldn't stop it
Kept going
It was so annoying
2 a 3 months later
Got a blinking and whistling tic
So annoying
My friend asked why i was wistling
I just answered idk
BEC IDK
If I tried making a YT channel I would probably get banned for my coprolalia. I shall forever stay in the comments section.
Your channel is gentle and kind and before watching this video your singing video was my favourite. This one, whilst being sad, speaks to your bravery. It takes a lot of courage for a young person to open themselves up and leave themselves vulnerable to the internet the way you did. We all know what an obnoxious entity the internet can be.
No one is brave because they have a disability, it’s how they handle that disability. I talk to at least 20 disabled people every workday but there’s a select few as strong as you. I’m lucky enough to be married to one of those select few. I hope they make further discoveries around the operations that can help some of those affected with the more extreme types of Tourette’s, and reducing the side effects.
Wow are they postcards or is it wallpaper behind you? Either way it’s beautiful. I can not imagine how hard it would have been for you as a 12 year old to be diagnosed with a lifelong condition/illness/syndrome/monster/disorder ( whatever term you feel suits it best). You must be fuming at the new ‘trend’ , I surely am and I don’t have Tourette’s. You are an amazing young lady from what I have seen and you should be proud of how you are educating us on all aspects of this disorder xx also ( as someone from the U.K.) I think you have a super lovely, soothing tone to your voice x
I have not even been diagnosed,
But I have experienced these tics for a year and a few months, experiencing both physical and weird noises. But I think I don't have to be diagnosed to know tics can be very embarrassing and make you want to distance yourself, so you don't burden others, even if they say it doesn't bother them. Or when dealing with physical tics the constant fear of hitting yourself or others without control. Is like a very own personal hell. Yes, they can be funny sometimes, but that's very rare in between the pain of one's body clenching, contorting, or unstoppable noises that make your voice sore, or even tics that stop your breath for a second. I again have not been dealing with this for as long as you but I do know Tics are not a quirky character, it's a battle. And to be able to find comfort and find I'm not alone in my battle makes the weight a bit lighter. Thank you for your channel and your voice to help people with Tourettes.
Your puppeteer analogy is vivid and it shows you have great awareness of your own cognitive levels and layers. I wonder if there is a way to gain control of the puppeteer?
I appreciate your videos. I don't understand these people that fake disorders or even mental illness. Something one does not wish for. My son with autism stims alot but now I think he might have tourettes. If someone can tell me the difference between stiming and ticcing. I like to talk to real people that have it or parents that have a child with the disorder. I don't care for doctors for I feel they absolutely offer nothing. I've added you to my prayers. You are a sweet young woman and I pray for the best for you.
I really appreciate you
I really love how you approach your condition with empathy in the sense you're sharing raw emotion and that can be so hard because it's so vulnerable, but I hope that your strength to do that helps others become more aware of what this condition really looks like for those who suffer from it. Not being in control of your body is terrifying, so it makes sense you see it as a monster. I think this was such an important analogy, especially the puppeteer, because that illustrates your experience so viscerally. Personally, I would appreciate seeing videos about your daily life and how you manage your condition. People can easily take for granted what it's like to go to a restaurant and sit down and have a meal and drive home and spend hours running errands for themselves and not even consider there are people out there who live with conditions like yours and how it affects them when they need to do those tasks. It's exhausting and it can be hard to be independent because of that too, which people don't often realize. Thank you for making these videos! I hope your videos continue to spread light and awareness to others!!!
Geodon (an antipsychotic) can be a tough one but has really helped with not only my bipolar and BPD but also my stimming as a result of ADHD and Autism. Sadly cant relate to the having tourettes part. Just wanted to put my experience with antipsychotics out here :)
This is…so so relatable. I’ve had these stupid tics my whole life and it’s awful. It’s so so frustrating being out of control. For me, it feels like I Want to crawl out of my skin . It’s so uncomfortable, especially trying to suppress.
Thank you for being so honest and open about your Tourettes. The analogy about a puppet and a puppeteer makes perfect sense. I had only come across Tourettes as uncontrollable swearing, and it was portrayed as being 'funny' or 'quirky'. You've helped me realise that it's so much more complicated than that.
I really don't get why people fake tourettes of all things. My tics legit give me the BIGGEST headaches and neck pains.
I feel so disgusted that people are making tourettes as a trend.. They really need some mental help.. As a person who have multiclorosis that tics when they feel angry, sad and excited and I think is some how similar to tourettes but I'm not sure since I'm still 16 and i don't know if their similar or not but yeah.. I just hope this tried will stop.. And tiktok themselves will take notice of this disgusting behaviour and put an end to it..
I have a question, I'm also on two antipsychotics but I don't seem to have any negative effects from them. You say it's hard for you to be on them, can you explain that a bit more? Only if you want of course xoxo
Tourettes isn’t a thing that you can choose to just stop. The tics can be suppressed but it takes a lot of focus and sometimes you can’t suppress them at all. I’ve had tics since I was 2 years old and it’s hard enough having the tics without being judged and being told you are faking
I hate what some people do when they fake tourettes or when they don't want to try to learn about it, one time I was leaving a room amd I was doing a few motor tic and one person put on a mask and said '6 feet away!! I dont want to get the tics!!' In a mocking high piched voice. I tryed telling them that tourettes is not contagious and they just ran away from me. Have a great day evreyone!❤
Do the drugs make much of a difference? Have you tried going a day without them, perhaps when your tics are in a waning phase?
Does @rachelchaleff really have tourette's? Could you make that your next video
I am obsessed with your background it’s the cutest thing I’ve ever seen!!!!
Day three of asking
I don't know if I have torettes or Huntington's disease because sometimes ill tic\twitch and I'm confused.
Can you possibly make a video on how to identify torettes? I'd really appreciate it! Have a good day and that you for these awareness videos aswell!
Only a neurologist can identify that sort of thing. If you develop abnormal movements you need to talk to your doctor about it.
She's mentioned in a previous video that you can't tell if someone for sure has Tourette's. Also, there's no specific test for it either, so I would say your best bet is to talk to your GP (who may refer you to a specialist like a neurologist) or talking to a psychologist or psychiatrist. I am not 100% sure on this, but I believe this channel said she was diagnoised by a psychologist? But she was absolutely professionally diagnosed and works with professionals still I imagine so she can manage her condition and the medication for it. As for Huntington's, I'm pretty sure that's hereditary or largely hereditary and if i'm not mistaken there are specific tests along with family history medical professionals use to diagnose it. Which, again, I would say a GP should be able to point you in the direction you need to go. I would say if anything she may make a video specifically talking about her journey before and during the process of her diagnosis, specially talking about how that went for her, but not everyone with conditions like these feel comfortable telling someone else how to identify if they have the condition as well and may tell you to ask a professional instead.
TH-cam is not the place for internet diagnosis.
Go see a doctor if you're worried.
If you think you've got huntington's disease then definitely go to the doctor's; even more so if you have it in your family.
Only genetic testing can tell you if you have Huntington’s disease. I hope you don’t have either. She isn’t a doctor/neurologist so she wouldn’t be able to tell you anything anyway. Please see a doctor.
@@Elina_Strongbear internet is never a good place for "diagnosis" period.
Always Consult a Specialist
if any 9 yr olds out there want tics have mine! please take them away I hate them
Hi I recently found your channel after learning its a trend to fake disorders on tiktok (i don't use the app). Which is so disgusting.
If you dont mind me asking, how do medication help? Do the decrease the amount of tiks you may have?
people actually WANT tourrets??????
Confront it strong lady. You are doing great work by educating people and being a role model for those who need it. My son is 12 and has been diagnosed with a lifelong genetic disorder that causes him much pain and he’s trying to accept that this is his reality. Unfortunately he got the disease from me and it scares him. So seeing videos like these, even though it’s technically not the same disorder, gives some measure of comfort and relatability. Thank you for your courage. So yes, confront it. You’re stronger than your diagnosis. You prove it with your videos and many of us are grateful. Vulnerability takes real courage. Virtual healing hugs. 🦋🌻🦋🌻🦋🌻
I really like the puppeteer analogy and I feel like using it in an art dedicated to Tourette’s.
I love painting and have been considering making a series of painted depictions of mental and medical disorders in a way of raising awareness but not having more than mild anxiety, OCD, and PTSD I’m worried about unintentionally being insensitive with my depictions so I’m not sure if I will do it.
Either way, thank you so much for sharing your experiences and feelings on the topic of Tourette’s.
Forgive me for lack of a better word.. but I find it "interesting" that singing song can stop the tics but talking doesn't. I appreciate your being open with us.. your awesome don't ever forget that.
621
I’d love to see a video of your tics if you’re willing to share. I’ve only been able to watch a few just recently. You mentioned “Jerry did it” was one (laughed at your uncle info when you mentioned!). If you could share ones that you started with, some that are the most satisfying (if there are ones that are more satisfying than others, not sure), and ones you’ve been able to laugh at once they’ve passed. Thanks for your content! Praying for you 🙏🏽
BEANS
i got rice... eughh
That is not funny 🤡🤡🤡🤡 go try to be funny somewhere else