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What Having Tourrete Syndome is Like


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Hello! For those that don't know me, I'm Sasha (31F) and I have severe Tourette Syndrome. Although it's a disability, and can very much be a struggle to live with, I love using it to make people laugh. I have what's called Coprolalia, which is the obscene and socially inappropriate verbal tics  5-10% with TS have, as well as Copropraxia, obscene hand gestures. Just to give you a quick run down to make this thread make sense. I'm not REALLY an asshole, this doesn't mean I don't have a filter. These aren't my thoughts coming out of my mouth, all it takes is hearing or reading something once, and it's in your subconscious, whether you want it to be or not. When you have Coprolalia, your brain scans your surroundings, digs through your subconscious, and then sends an electrical signal to the part of the subconscious which holds the worst possible thing to say for that setting, and that's what makes you involuntarily yell. (A very simplified version)

So take the phrase, "I have a bomb!" The chance of me yelling that in an open field, by myself where no one will hear, is practically zero. Now the chance of me yelling that while going through airport security is 100% I have never managed to get through an airport without yelling "I have a bomb!"  and "I have drugs up my ass" Because your brain is constantly scanning the area, seeing all the "no explosives, no drug" signs, subconsciously aware of 9/11 etc. etc.

It's a bit scary at the time, but I'm able to laugh about it after. This is something I often share for laughs IRL, but since I spend way too much time on here,(occasionally I post in the fiction section) I thought I'd share a few stories with you all.

A few years ago I got stuck in a DUI checkpoint. The first things out of my mouth should have been "I have TS."  I'm so used to ticcing and yelling bizarre things, it's just my normal, that I often forget it's not normal for other people. So anyway, the officer motioned for me to roll down my window, and I did. Then they asked for my license, etc. Everything was going fine until the moment they asked if I had any illegal substances on me or in my vehicle. There are cops all over the place in this intersection, and I end up yelling, "I HAVE DRUGS UP MY ASS!" I could see cops everywhere just stop and turn. I'm just like oh crap, and open my mouth to explain no, I don't have drugs, and what comes out is, "IT'S A GUN!" Officers are starting to walk over. I'm sweating bullets, I'm shaking my head, and trying to explain but everytime I open my mouth something worse comes out. I end up yelling "THERE'S A DEAD HOOKER IN MY TRUNK". They're all just staring at me. I finally manage to hand over a DRS note I keep in my car specifically for this. The officer starts laughing and sends me on my way, I'm very eager to get out of there, and I start driving off before I roll up my window, and as I drive past the line of officers I start making oinking noises 0.0

Last year My grandma died, my very religious white grandmother who was a bit on the racist side. We have her service outside at the grave site. Her ashes are upfront in an urn. I was really nervous and didn't want to go because I knew my tics were going to be disruptive, but my family kept saying, "we all know you and understand, don't worry about it, come anyway, it's just going to be family." so I do. ... It was not "just family" All of my grandma's church friends and out of state relatives were there. None of which knew I had TS. ..oh boy, The things that were coming out of my mouth should never be yelled at a religious woman's funeral...or anyone's funeral for that matter. I kept yelling, "GRANDMA, GET BACK IN THE JAR!" "LET'S DO LINES OF GRANDMA" "MY GRANDMA CHOKED TO DEATH ON A BIG BLACK DICK" ... and... oyy ... "I COULD BE AT HOME MASTURBATING RIGHT NOW..." My grandma's church friends are absolutely horrified, and my family is trying so hard (unsuccessfully) not to laugh. Apparently I put the "fun" in "funeral"

Ok so this last one is pretty personal, but what the hell. This is the story of my very first pap. 0.0 So I have Kaiser as my health insurance, and for those unfamiliar with it, all the drs. and everyone share information, it's all connected. So I everytime I see a new dr. I don't have to explain my previous health conditions, it's all right there in my file. The down side of everyone seeing your information, is no matter what kind of dr. you go to, you can't escape any kind of preventative care. They will just keep nagging you and nagging you until you cave. So when I went in to see my therapist, I came out with a ob/gyn appointment. So for whatever reason I got sent to an out of network ob/gyn, which meant they did not previously know about my condition. I did not realize this at the time. I go in, everything's going fine, ...until the breast exam... She's doing her thing, and suddenly my hands shoot out, latch on to hers, push them down even harder and in the worst possible Irish accent you've ever heard, yell "FEEL ME TITTIES" I'm mortified. She's staring at me in shock. I apologize and the test moves on. Feet in Stirrups wishing I was anywhere else in the world. Cue worst possible verbal tics. Sexual moaning. LOUD sexual moaning, followed by "FUCK ME, DADDY". She's just glaring at me this whole time and I can't figure out why. She finishes, I sit up and then the little light in my head finally clicks. "You know I have Tourette, right?" I asked. She stares at me blankly for what feels like a full minute and says, "I do now."

 

 Please enjoy my unfortunate moments, and the next time you lie awake at night cringing from your past, you can rest assured you didn't tell a cop you had drugs up your ass :)

 

 

 

 

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Using your disability to make people laugh is great, and I think it's something a lot of people with TS do. Thanks for the stories, they really made my day!

When you said you were making oinking sounds after the window was rolled up, I was like, "thank god she could hold it in until the windows rolled up." lol.

Are close calls like that common? I imagine they are.

If you ever have any more stories like this to share, I'd love to hear them, they're hilarious.

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Dr. Phil actually did an episode about this! That's how I found out about it. I was like, "there's actually a condition that makes you use profanities and racial slurs at random moments in your life?!" Wow!????? I thought that was the funniest thing ever. I was shocked, honestly, I still am shocked. LOL!??????

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3 hours ago, kasarberang said:

Using your disability to make people laugh is great, and I think it's something a lot of people with TS do. Thanks for the stories, they really made my day!

When you said you were making oinking sounds after the window was rolled up, I was like, "thank god she could hold it in until the windows rolled up." lol.

Are close calls like that common? I imagine they are.

If you ever have any more stories like this to share, I'd love to hear them, they're hilarious.

I'm glad you enjoyed them xD I love making people laugh, it makes me feel less like a waste of space. The tics are repetitive and annoying to myself and others so it's hard to go out sometimes because I feel like that person no one wants around, unless I can make them laugh. Woo defense mechanism xD

I didn't get the window up in time xD I oinked at the whole row of cops ? And sometimes oink at them if they're in front of me. It's nothing compared to what I say to nuns though ?

I have so many stories! 0.o I almost got our Tourette booth kicked out of a disability fair because I kept yelling sexually explicit things at the nuns and boy scouts.

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9 minutes ago, SashaButters said:

I'm glad you enjoyed them xD I love making people laugh, it makes me feel less like a waste of space. The tics are repetitive and annoying to myself and others so it's hard to go out sometimes because I feel like that person no one wants around, unless I can make them laugh. Woo defense mechanism xD

I didn't get the window up in time xD I oinked at the whole row of cops ? And sometimes oink at them if they're in front of me. It's nothing compared to what I say to nuns though ?

I have so many stories! 0.o I almost got our Tourette booth kicked out of a disability fair because I kept yelling sexually explicit things at the nuns and boy scouts.

WHAT?!!! Oh my God!!!!!????????????????????? Tell me about THAT story! LOL!

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3 minutes ago, BabySpiderBoy said:

WHAT?!!! Oh my God!!!!!????????????????????? Tell me about THAT story! LOL!

Ok, So there are Tourette support groups, except the closest one to me is about an hour and a half drive. They were posting about how they were going to have a booth at a disability fair and were looking for volunteers to come help out. So I was like cool! I'll do it, I don't often see other people like me, I'm a bit of an oddity in my area, even most of my doctors say I'm one of the worst cases in the area. So I drive down on a sunday morning, only to realize the disability fair...is in a Catholic Church... So religion a BIG trigger to my tics and Catholicism is BIG into symbology. We were only in a side building, but even that was covered in crucifixes and imagery etc.  So I start ticcing like, "JESUS SUCK MY NIPPLES."  "JESUS GAVE YOU CANCER" "JESUS, FUCK THAT LAMB" etc etc. other booths started to complain, and we just kept getting moved farther and farther away until our table was just practically outside. The mayor was there doing tv interviews with all the different booths (he skipped ours) Then Mass let out...

All these people start pouring in, including nuns and a troop of boy scouts. Everytime they got close I started hissing, swearing, making animal noises, ticcing in nonsense words, like I looked legit possessed. When the nuns would walk up I was yelling "Stick your rosary up your ass!" "Stick that crucifix up your ass!" and the boyscouts it was "The boyscouts of america have a nice ass!" And yeah... Tics really liked ass that day lol

 

It's hard to find support when you have this kind of TS, because it makes so many people uncomfortable, and even though it's completely involuntary, people still get you kicked out of places. Like umm, sorry I'm not the "right kind" of disabled? Even the 90% of people with TS who don't have coprolalia don't want to be associated with the 10% that do and don't like us coming to events because that's all people see.

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29 minutes ago, SashaButters said:

Ok, So there are Tourette support groups, except the closest one to me is about an hour and a half drive. They were posting about how they were going to have a booth at a disability fair and were looking for volunteers to come help out. So I was like cool! I'll do it, I don't often see other people like me, I'm a bit of an oddity in my area, even most of my doctors say I'm one of the worst cases in the area. So I drive down on a sunday morning, only to realize the disability fair...is in a Catholic Church... So religion a BIG trigger to my tics and Catholicism is BIG into symbology. We were only in a side building, but even that was covered in crucifixes and imagery etc.  So I start ticcing like, "JESUS SUCK MY NIPPLES."  "JESUS GAVE YOU CANCER" "JESUS, FUCK THAT LAMB" etc etc. other booths started to complain, and we just kept getting moved farther and farther away until our table was just practically outside. The mayor was there doing tv interviews with all the different booths (he skipped ours) Then Mass let out...

All these people start pouring in, including nuns and a troop of boy scouts. Everytime they got close I started hissing, swearing, making animal noises, ticcing in nonsense words, like I looked legit possessed. When the nuns would walk up I was yelling "Stick your rosary up your ass!" "Stick that crucifix up your ass!" and the boyscouts it was "The boyscouts of america have a nice ass!" And yeah... Tics really liked ass that day lol

 

It's hard to find support when you have this kind of TS, because it makes so many people uncomfortable, and even though it's completely involuntary, people still get you kicked out of places. Like umm, sorry I'm not the "right kind" of disabled? Even the 90% of people with TS who don't have coprolalia don't want to be associated with the 10% that do and don't like us coming to events because that's all people see.

Awwwww!!!!!??????☹️ You KNOW it's bad when other people that share your disability don't want to be around you. I feel sorry for you guys! But I'm even more impressed that an condition like this, actually exist. Like oh, social events must be a NIGHTMARE!!!!???????? Not to mention making friends. When I first heard about this on Dr. Phil, I just thought it was for publicity but then I researched it. And yeah, Lord behold it's actually very real.

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3 hours ago, SashaButters said:

I'm glad you enjoyed them xD I love making people laugh, it makes me feel less like a waste of space. The tics are repetitive and annoying to myself and others so it's hard to go out sometimes because I feel like that person no one wants around, unless I can make them laugh. Woo defense mechanism xD

I didn't get the window up in time xD I oinked at the whole row of cops ? And sometimes oink at them if they're in front of me. It's nothing compared to what I say to nuns though ?

I have so many stories! 0.o I almost got our Tourette booth kicked out of a disability fair because I kept yelling sexually explicit things at the nuns and boy scouts.

If it makes you feel any better If I knew you IRL I would love hanging out with you. I have no respect for social norms and would be 100% okay with you saying/doing whatever, intentional or not. (So long as it isn't illegal o fcourse, lol.)

If you ask me, the nuns and Boy Scouts need to develop a sense of humor or a sense of understanding. Maybe there's a reason for people at the Tourette booth to be yelling not very acceptable things, cause you know...it's a Tourette booth.

You're not a waste of space! I know a random person on the internet saying that won't fix that feeling, but I feel it should be said anyway. If ever you need someone to talk to or whatever, hit me up. :)

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5 minutes ago, kasarberang said:

If it makes you feel any better If I knew you IRL I would love hanging out with you. I have no respect for social norms and would be 100% okay with you saying/doing whatever, intentional or not. (So long as it isn't illegal of course, lol.)

You're not a waste of space! I know a random person on the internet saying that won't fix that feeling, but I feel it should be said anyway. If ever you need someone to talk to or whatever, hit me up. :)

That's funny buddy, because I feel the same way about you!??♥️☺️ LOL! I would LOVE to hang out with you in real life. What do you mean by, "I have no respect for social norms?"???? And also feel free to hit me up if you need anything. And that goes for you too @SashaButters!

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11 minutes ago, kasarberang said:

You're not a waste of space! I know a random person on the internet saying that won't fix that feeling, but I feel it should be said anyway. If ever you need someone to talk to or whatever, hit me up. :)

thanks, but it's not a big deal, at least not anymore ^^ I had brain surgery a few months ago for it and a Deep Brain Stimulator implant was put it, and oh man. It's amazing what some electrical voltage can do to your depression XD I haven't felt this good in yeeeaaaarrrssss. I still tic, but at least I'm happy about it XD

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3 minutes ago, SashaButters said:

thanks, but it's not a big deal, at least not anymore ^^ I had brain surgery a few months ago for it and a Deep Brain Stimulator implant was put it, and oh man. It's amazing what some electrical voltage can do to your depression XD I haven't felt this good in yeeeaaaarrrssss. I still tic, but at least I'm happy about it XD

How does that work exactly??? That deep brain stimulator. Doesn't that hurt you, what does it feel like????

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1 hour ago, BabySpiderBoy said:

That's funny buddy, because I feel the same way about you!??♥️☺️ LOL! I would LOVE to hang out with you in real life. What do you mean by, "I have no respect for social norms?"???? And also feel free to hit me up if you need anything. And that goes for you too @SashaButters!

In public settings, I'm not good at determining what is and is not socially appropriate to do/say, so often times I do/say things that might be socially unacceptable/awkward.

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54 minutes ago, BabySpiderBoy said:

How does that work exactly??? That deep brain stimulator. Doesn't that hurt you, what does it feel like????

No it doesn't hurt. It's kind of funny because now I generate my own Bluetooth signal lol I have a little remote and a cellphone with an app on it where I can control the electricity a little bit. It's always on and constantly shocking me. What I do feel is when I change settings. 0.o Oh that is trippy! I feel like it's the closest thing to feeling what jumping into hyper space is like lol It's almost like everything is suddenly rushing forward and I need to hold on to something. I'm being used as a guini pig because it's not FDA approved for tourette's, I had to be approved by an entire medical board. I had to send them videos of how bad my tics were, prove how much it was impacting my life etc.

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5 hours ago, SashaButters said:

I'm glad you enjoyed them xD I love making people laugh, it makes me feel less like a waste of space. The tics are repetitive and annoying to myself and others so it's hard to go out sometimes because I feel like that person no one wants around, unless I can make them laugh. Woo defense mechanism xD

I didn't get the window up in time xD I oinked at the whole row of cops ? And sometimes oink at them if they're in front of me. It's nothing compared to what I say to nuns though ?

I have so many stories! 0.o I almost got our Tourette booth kicked out of a disability fair because I kept yelling sexually explicit things at the nuns and boy scouts.

@SashaButters

All I can say is that each one of us has our unique disabilities, that make us unique and the way we are. Each one of us has our quirks, and does things that may be a little bit out of the ordinary, and what the hell everybody does that. I’ve read some stuff on Tourette’s syndrome and what can happen. I’ve heard people saying things that are worse than what you tell us in your stories. The thing that everyone has to realize is that you do not have any control over some of the things you do or say because of the Tourette’s.

I can just about imagine what it would be like if you me and a whole bunch of guys and girls got together and we decided to go somewhere, and then there was a cop, and you were speeding, and he pulls us over, and you start screaming some of the things at the cop and oinking at him. Because you have Tourette’s, you have that note, so I’m wondering if you would simply say all that stuff first, and then give him the note, or give him the note, and then say all that stuff ?

I guess that way, you could get away with it, but if you were speeding they probably still give you a ticket. I’ve heard people that are disabled like this, and they will say the weirdest things, or they will yell the F word or God dammit, or something even worse, at high volume, and it can be and is embarrassing, so I can understand why you would be of a mind not to attend a serious service if the people that you were going to be around we’re not used to what you deal with. I can only imagine what your grandmother’s funeral was like With all those people around, and all those people at the Tourette’s booth who were here at all the stuff about screwing Jesus, fucking Jesus another types of things that you would probably not say if you had Tourette’s and you were in a church. I’m sure it is quite mortifying to have these things happen, and you don’t have any control over what you might say. I think I could characterize Tourette’s as putting four dice in a cup, and then rolling the dice – each time you roll the dice something else happens, and you may say one thing one day another thing another day, and you’re not sure what will come out of your mouth, because you may not be thinking to say those words, but they probably come out anyway.

in all seriousness, I do understand that there are times that this can be embarrassing, but I can tell you from experience that there are many people who have a disability, and they figure out ways to deal with their disability, and they make it work. I would also probably not be embarrassed if I was hanging around with you, so don’t worry about that. I’ve had a lot of good friends, and some of them wear diapers 24 seven, and have other disabilities that they deal with, but don’t put yourself into a class where you feel any less of a individual because of something that you cannot control. I’m sure that the individuals who you have dealt with, and know you very well, I understand what you deal with, so they are not shocked when something comes out of you that you’re not sure of.

I do think it’s kind of funny however, that you were OINKING At the police. I guess what you have to do is do what I do, and deal with something that is normally an impediment by trying to find the good in it, or find ways to deal with it so that it isn’t bothering you as much. To me, with that device you were talking about, it sounds like it gives you the shock, and it’s like releasing endorphins, that help you relax or feel better. I’ve had this type of reaction when I feel real good about something, or when I finally reach the pinnacle of something that is very important to me and I have made it all the way to the top and completed the task. I can just about imagine that you would probably feel real funny sometimes so you have to make sure that you’re not going to fall. Hopefully driving isn’t something that bothers you when you have to use that thing, but I’m glad that you’re able to have a device that helps you even if it is not something that is “Approved by the FDA“ sometimes things that you need for some reason are not approved by the FDA, or take longer than hell to get approved by the FDA so that it is safe. Sounds to me like you were able to handle this very well, and I’m happy for you.

By the way you probably noticed that I added you to my follow list. I can just about imagine the stories that you could tell us about some of the weird situations, that you have dealt with throughout your life. Thank you for sharing these stories with us. Feel free to also follow me if you wish.

The best way to handle a disability like this it should just take it by the horns and ride it. There are things that you can control, and sometimes there are things that you cannot control. As long as you were able to function to the highest level possible, and you are enjoying yourself, and using a disability as a way to make people laugh, that’s pretty cool. It shows me that you were able to deal with something that’s very embarrassing and turn it into something that you can deal with appropriately, even if you sometimes say something that is not appropriate.

feel free to post any other stories if you wish: I’d love to hear more of them.  
 

hang in there! ****HUGS****
 

Brian

Edited by ~Brian~
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22 minutes ago, SashaButters said:

No it doesn't hurt. It's kind of funny because now I generate my own Bluetooth signal lol I have a little remote and a cellphone with an app on it where I can control the electricity a little bit. It's always on and constantly shocking me. What I do feel is when I change settings. 0.o Oh that is trippy! I feel like it's the closest thing to feeling what jumping into hyper space is like lol It's almost like everything is suddenly rushing forward and I need to hold on to something. I'm being used as a guini pig because it's not FDA approved for tourette's, I had to be approved by an entire medical board. I had to send them videos of how bad my tics were, prove how much it was impacting my life etc.

Wow!?? that is SO interesting. so can you like use it to charge your cell phone? LOL! And how well does that work for you?? Does it help in other ways??

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10 minutes ago, BabySpiderBoy said:

Wow!?? that is SO interesting. so can you like use it to charge your cell phone? LOL! And how well does that work for you?? Does it help in other ways??

Yes it helped in a lot of ways. I would often give myself black eyes from punching myself in the face. ( once I had really put myself in my place lol I had a really bad black eye, bruised face and nose and a lady stopped me in a bathroom and gave me a card for a domestic abuse help center. She thought I was in an abusive relationship and I had to tell her I did it to myself lmao) so I don't punch myself as often, or others, or walls. I'm not falling down as much. Involuntarily twerking in a check out line isn't a thing anymore THANK GOD ? If I got too close to people I would have to fight off the impulse to lick them. Some strangers weren't so lucky, mask mandate really helped with that, it acted like a muzzle lol I don't throw things as often, although I do still occasionally pour drinks over my head. I still need to drink things with a cover or lid because it seems to lesson the impulse. 

I can sit still and write and focus much better now. I had this bad impulse to throw myself into traffic, off bridges, high places etc. Not like I was suicidal, but it's called Call of the Void. That's much more controlled.  

 

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7 minutes ago, SashaButters said:

Yes it helped in a lot of ways. I would often give myself black eyes from punching myself in the face. ( once I had really put myself in my place lol I had a really bad black eye, bruised face and nose and a lady stopped me in a bathroom and gave me a card for a domestic abuse help center. She thought I was in an abusive relationship and I had to tell her I did it to myself lmao) so I don't punch myself as often, or others, or walls. I'm not falling down as much. Involuntarily twerking in a check out line isn't a thing anymore THANK GOD ? If I got too close to people I would have to fight off the impulse to lick them. Some strangers weren't so lucky, mask mandate really helped with that, it acted like a muzzle lol I don't throw things as often, although I do still occasionally pour drinks over my head. I still need to drink things with a cover or lid because it seems to lesson the impulse. 

I can sit still and write and focus much better now. I had this bad impulse to throw myself into traffic, off bridges, high places etc. Not like I was suicidal, but it's called Call of the Void. That's much more controlled.  

 

Can you resist the impulses or is that involuntary too???

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4 minutes ago, BabySpiderBoy said:

Can you resist the impulses or is that involuntary too???

It takes all my concentration and willpower, and maybe SOMETIMES I can. I call it an impulse, but its actually the presesonsory tic that accompanies the actual tic. Like If I get a sudden strong impulse to raise my hand for no reason, it means I'm about to do it involuntarily. But when the tic is really strong, I don't get that warning, it just happens. I guess it's more like a build up of pressure in the affected part of the body.

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28 minutes ago, SashaButters said:

It takes all my concentration and willpower, and maybe SOMETIMES I can. I call it an impulse, but its actually the presesonsory tic that accompanies the actual tic. Like If I get a sudden strong impulse to raise my hand for no reason, it means I'm about to do it involuntarily. But when the tic is really strong, I don't get that warning, it just happens. I guess it's more like a build up of pressure in the affected part of the body.

So it's like your body is LITERALLY betraying you. Wow!? And I thought my body betrayed me.? LOL!??????? You're LITERALLY fighting with your body. Which is sad but it's also kind of astounding. no offense! And your disability can LITERALLY make you kill yourself, EVEN if you don't want to. That's really scary.?????????

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12 minutes ago, BabySpiderBoy said:

You're LITERALLY fighting with your body

No child needed to play the "stop hitting yourself" game lmao ? 

I sort have always viewed it as having to share my body with a separate entity whose soul purpose is to embarrass me xD You just have to learn to laugh at yourself, but yeah, it was getting pretty dangerous there for a bit. I'm still afraid of knives because what if it suddenly want me to slash my throat or stab someone 0.0 It's bad enough I sometimes grope my mothers chest...with both hands ?  ??

So the most embarrassing tics I have are the internal "pushing" tics, and those make me have accidents ?? Nothing like feeling like you have to pee, or worse, and then your bodies like, here let me help with that! *pushes it out into pants* 

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19 minutes ago, SashaButters said:

No child needed to play the "stop hitting yourself" game lmao ? 

I sort have always viewed it as having to share my body with a separate entity whose soul purpose is to embarrass me xD You just have to learn to laugh at yourself, but yeah, it was getting pretty dangerous there for a bit. I'm still afraid of knives because what if it suddenly want me to slash my throat or stab someone 0.0 It's bad enough I sometimes grope my mothers chest...with both hands ?  ??

So the most embarrassing tics I have are the internal "pushing" tics, and those make me have accidents ?? Nothing like feeling like you have to pee, or worse, and then your bodies like, here let me help with that! *pushes it out into pants* 

Wait, you groped your mother's chest?!?????? And your tics make you pee yourself?! Can they make you poo yourself too?????☹️????

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3 minutes ago, SashaButters said:

Not happy about it ?? neither was she happy about the time I shit myself in her car ??????

Let me guess? your tics did THAT too?!???????

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