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  • 6 weeks ago
20-YEAR-OLD content creator Rachel lives with Tourette's syndrome - but is accused of faking her condition "every single day." Now she's here to set the record straight. The social media star experienced minor tics - involuntary movements and sounds - from early childhood, but at the age of 15 her condition intensified almost overnight. Parents Deborah and Frederic witnessed the "scary" onset of more severe symptoms and immediately took their daughter to the doctor. Rachel was officially diagnosed with Tourette's syndrome with coprolalia - meaning she involuntarily swears and "cannot help it" as hard as she might try. She remembers how her "entire world was crashing" when she learnt that she had the condition and she became reclusive. Rachel "absolutely refused to go out anywhere" and had to start homebound learning - she became isolated from family, friends and the outside world. She admits that she still struggles going out in public to this day. To make matters worse, when Rachel started opening up on social media and sharing her experiences with Tourette's, she faced a backlash - with people leaving comments like "You need an exorcist" and "That's so fake, no way this is real." However, Rachel is determined not to let the haters win - and today she is also planning to "face [her] fears" with the support of Samantha as they go out for some food together. Rachel would usually ask others to order her food for her to avoid awkward situations with waiters - but today she wants to prove to herself that she can find the courage to order for herself. Will Rachel's uncontrollable cursing land her in trouble - or will she give her self-confidence the boost she's hoping for?

Follow Rachel:
https://www.tiktok.com/@rachelchaleff
https://www.instagram.com/rachelchaleff

Category

😹
Fun
Transcript
00:00People say I fake my Tourette's.
00:02I wish I was faking.
00:03I swear and curse every single day.
00:07I absolutely cannot help it, even if I tried.
00:10I have an immense fear of going out in public
00:13because so many people just simply don't understand.
00:16You need an exorcist.
00:18No way, this is real.
00:21Hi!
00:22Today my friend Stan is coming over
00:24and we're going out for some food.
00:26I often let other people order for me
00:28so that I don't get into any awkward situation.
00:30Today I'm going to face my fears
00:32and I'm going to try and order my own food.
00:34How are you feeling?
00:35I'm pretty nervous right now.
00:36Hi, how are you ladies?
00:37Can I do some food for you too?
00:44Hi, my name is Rachel.
00:45I have Tourette's syndrome.
00:46Shut up.
00:47And yes, it's a real condition.
00:51Tourette's syndrome is a neurological disorder
00:54that causes me to tick and ticks are involuntary.
00:57movements and sounds that I make
01:00that I absolutely cannot control.
01:02The motor ticks are simply the uncontrollable movement.
01:05You'll see a lot in my face with my mouth
01:08and my neck and my hands, even my legs and my feet.
01:11I kick them.
01:12My back will twitch.
01:13It's absolutely everywhere.
01:15The vocal ticks consists of random
01:19little noises that I make.
01:20And I also have something called coprolalia,
01:25which is the profanity.
01:27Some of my most common ticks are a lot
01:31of very casual profanities, like the F word, like F you.
01:36And a lot of whistling.
01:39It does become quite frustrating sometimes
01:43that I cannot stop my ticks or control them.
01:46But at the end of the day, this is my life.
01:49This is how I have to live.
01:50So I don't have any other choice.
01:52I had incredibly minor ticks throughout my entire childhood,
01:56but they were so minor that you would have never noticed.
01:59It was something as simple as my neck or maybe my eyes twitching.
02:03Good morning.
02:04Hey, I see you're dressed.
02:06You have plans for today?
02:07Yes.
02:08I have to make TikToks.
02:09And then after that, Sam is coming over.
02:12My onset of Tourette's syndrome occurred
02:14when I was about 15 years old.
02:16And it happened semi-rapidly.
02:20I remember you walking into the kitchen
02:23and you seemed off, you seemed pale,
02:26and you bumped into the wall.
02:29And then your arms started going in different directions
02:32and you started to fall to the ground.
02:35And I caught you in midair.
02:38It was scary.
02:39It was very scary.
02:41You know, the person we knew was literally gone.
02:45I was taken to the doctor pretty much right away.
02:47The official diagnosis made me feel like my entire world was crashing.
02:51I absolutely refused to go out anywhere.
02:54I had to start homebound learning.
02:57I hardly ever saw my friends.
02:59I was incredibly isolated for a very long time.
03:03I do remember feeling like my entire life was over.
03:07I remember you saying it.
03:09It was crashing.
03:10Over and over and over again.
03:11To be honest, I felt like that too.
03:13As a parent, it was tough because I thought everything was gone.
03:17The turning point was honestly creating a community on social media.
03:23Welcome back to Music with Tourette Syndrome.
03:25I posted a video to TikTok like every other teenager was doing.
03:28And in that video, I was actively ticking.
03:31That video blew up and I received hundreds and hundreds and hundreds of comments
03:36asking me questions or some people were relating to my tics
03:40and they were happy to see it in the media.
03:42And I realized, oh my gosh, I can do something positive.
03:47I am going to record another Tourette's awareness video.
03:50People accuse me of faking my condition every single day.
03:53I mean, it is one of the most, well, comment, hate comments that I receive.
04:00So that is what I am going to talk about today.
04:03When people say that I am faking my Tourette syndrome, I feel incredibly invalidated.
04:08It's a core part of who I am, whether I like it or not.
04:12So to say that I am faking this is to say that it's like I'm just faking me.
04:21You need an exorcist.
04:23She's been taken over by a parasite.
04:25That's so fake.
04:26No way this is real.
04:27I totally understand how another person cannot, you know, comprehend the fact that I cannot
04:37control my movements or what is coming out of my mouth.
04:41Oh, that was not voluntary.
04:43That hurt.
04:44There's not a lot of information out there about Tourette syndrome.
04:47And that's why I try so hard to provide just that.
04:52Just remember that when approached with something you're crazy or someone that you don't quite
04:58understand, keep an open mind and an open heart.
05:01The positive response that I received does make all of this worth it.
05:06I don't see why I would ever succumb to the negativity when I still have all those people
05:11out there supporting me, telling me that they appreciate what I do and that I affect
05:16their life positively.
05:18It's not just okay to be different.
05:20It's amazing.
05:21Hi.
05:22Hi.
05:23What's up?
05:24Reza, how are you?
05:25I'm okay.
05:27I have known my friend Sam since we were five years old.
05:32She has been here through absolutely everything.
05:36How did you feel when my symptoms first started to escalate?
05:40I instantly knew that your life was going to be different and I want to be there for you
05:45because, you know, it's just this thing that people are going to notice very quickly.
05:50I still experience a lot of anxiety around going out in public.
05:55Something that I tend to avoid is going out to eat.
05:58The ritual of talking to the waiter and just being in that public setting.
06:04It is so overwhelming.
06:06Today I want to try something new and I'm very nervous.
06:10Okay.
06:11We are going to go out to eat at a restaurant.
06:14Okay.
06:15And I'm going to try and order for myself.
06:19All right, we can do it.
06:20I can be there to help you if you need, but let's 100% do this.
06:23I have to face fears every single day of my life.
06:26And I do think that it is vital for change.
06:31If I go into hiding or if others like me go into hiding,
06:35we will never ever be able to normalize ourselves.
06:37This is nice.
06:38This is really nice.
06:39How are you feeling?
06:40I'm nervous.
06:41I'm pretty nervous right now.
06:42What if, you know, the waiter does not understand?
06:46What if the waiter is judging me?
06:47What if the waiter wants me out of the restaurant?
06:50You know?
06:51We're going to get through it and we're going to do it.
06:52We're going to do it.
06:53We're going to do it.
06:53We're going to do it.
06:54We're going to do it.
06:54Okay.
06:55I'm nervous to see how this goes.
06:57I'm human.
06:58I can't help but fear what the public's reaction may be when I'm ticking and all of that.
07:04Hey ladies.
07:05Hi.
07:06How are you?
07:06Good.
07:06My name's Harley.
07:07I'll be taking care of you.
07:08Can I do some food for you too?
07:09I'm just going to get the mac and cheese just without the shallot.
07:13Sure.
07:13No problem.
07:14I'm for you.
07:15And I, I will have the chicken plus the biscuits, please.
07:21Perfect.
07:21Shut up.
07:21You ladies are all set.
07:22I'll get them started for you.
07:23Thank you so much.
07:24You so much.
07:25You did?
07:25You did?
07:26Yeah.
07:27How do you feel?
07:29I feel an adrenaline rush.
07:31That was definitely scary, but she was really nice and she didn't even have a reaction.
07:37I feel like now in the future, I'll feel more comfortable just, you know, ordering food like
07:44every other person.
07:45You did good.
07:46Yeah.
07:46Next time I'll order your food.
07:48Yeah, exactly.
07:49Now eat the food that you worked so hard for.
07:51Yeah.
07:51I would say that I have come to terms with my condition because this is my reality.
07:56I can't live any other way, so why should I spend all of my life sulking?
08:03You know, it's pointless.
08:04In order to make real change, we need to be our authentic selves.
08:10So I just wanted to thank you really quickly.
08:14I have a disability called Tourette syndrome and that causes all the cursing that you're hearing.
08:21None of that was directed at you.
08:22Of course.
08:23But honestly, you were just so sweet.
08:26I felt normal.
08:28I want to thank you for being so accommodating.
08:30Of course.
08:30But you ladies enjoyed everything truly, honestly.
08:34Of course.
08:34Yeah.
08:35All I have to say to those who have judged me because of my condition is hope that they
08:42learn to not judge others so quickly when they see something or someone that they don't quite
08:47understand.
08:48Believe that we should all embrace our differences.
08:50And I think that we should all be committed to being so beautifully and uniquely and truly ourselves.
09:05And I think that we should be a better option because of our experiences, our experiences are
09:13going to be a better option.
09:14So I can, clearly, not give a chance.
09:15I think that I have to say I will be any better option because of our experience.
09:17To be an easy one, if I don't get rid of this, our experiences are really important.
09:19We should be a better option.
09:19I think that we should take those two things.
09:21I think that we should give that option because of my experience as possible.
09:24That's the most part of my experience as well.
09:25I mean the patience not to be one of us.
09:27That's not for us.
09:29Thanks for the time.
09:30You want to be one of us.
09:31I'll be one of us.
09:32I want to hear you.
09:32I want torobee myself.
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