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.
