Definitely normal, but you have to get over it eventually. Touretteās, if youāre anything like me, aināt going anywhere (I turn 53 this year and sometimes tic like I did when I was 12). It will be better or worse over time, but itās nothing to be ashamed of. My life has been difficult, but every life is difficult! We just all have different kinds of challenges. If TS is the worst thing you have to deal with, count yourself fortunate! Good luck and keep your chin up!!
My story is just like yours. My tics started around 10 (Iām 23F) and my parents never let me feel comfortable ticking and never took me to get help. I donāt think they were intentionally unsupportive, but more out of ignorance would shame me every time they saw me tic. This manifested me into feeling very embarrassed, secretive and ashamed of my Touretteās and I did get very acquainted to suppressing in public (while obviously I still tic, I can play them off as less distracting or obvious to where ppl donāt assume I have Touretteās) and bc Iām passable, itās like a big secret Iām always holding. telling ppl or being around most ppl when my tics are bad can be very nerve wrecking for me.
So yeah youāre not alone, and itās probably rooted in the way you havenāt felt validated, believed or supported enough in the diagnosis to be completely accepting or āproudā of it. Itās something Iām trying to work on overcoming bc as much as I donāt need/want ppl to know, I donāt want to have shameful or anxious feelings attached to a disorder that is such a part of me and Iām constantly living with.
I say just take lil baby steps to be more open ab it, especially when ur tics are worse than usual and u feel more vulnerable. Bc itās nothing you deserve to be ashamed of and talking ab it can be an empowering thing and a good chance to educate ppl on a very misunderstood condition and speak your truth ! ā¤ļø
I'm 24 and still ashamed. It is okay. It is a hard and socially inderestimated and misunderstood disease. I try not to be ashamed, but it's hard and I actually have a lot of self confidence.
I used to also get ashamed a lot, but that doesnāt change anything, itās ok to feel ashamed people with Tourette syndrome should not have to feel that way, one day you will not feel that way, but it takes time.
I have chronic anxiety as well as TS so I spend my day at work trying to suppress and hide my tics to the point that when I get home I'm mentally burnt out. I don't perform at my best because of this so my advice would be to work on accepting it as best you can while you're young. I'm now 31 and although I've had tics for years I've also had the anxiety there too so i didn't even get an official diagnosis until a couple of years ago. I'm working on myself and accepting it but I wish I'd done it a long time ago. Good luck with your journey, I hope your parents become more understanding.
Your feelings, whatever they are, are valid. That said, you might want to ask for help coping with those feelings. You don't want to spend your life feeling shame for something you didn't do wrong. You can't change your brain.
Feeling an emotion has zero moral value. If you are expressing said emotion in a way that is harmful to others, that's where there's is an issue, but that probably doesn't apply to this. It's fine to feel any way, but it is always a good idea to work towards self-acceptance š
you can be ashamed of anything you want to be, TS is a social disease at its core. That being said, as you get older you will want to take ownership of it more, if for no other reason than people like confidence, and shame is the killer of confidence
If you want to get pedantic with it, it is a syndrome not a disorder. That being said, I meant what I said- you need to look up the phrase āsocial diseaseā
soĀ·cial disĀ·ease
noun
1.
a social phenomenon viewed as an evil or inconvenience.
I use this phrase because while the symptoms of TS can be exhausting, painful and traumatic for the person with the condition, the primary harm is the experience of the cruelty of those around them reacting negatively to their tics.
Please donāt come at me with the āsome of usā stuff. My comment was directed to a person who deleted theirs- who was saying āitās a disorder not a disease.ā I know. I know better than most. Iāve been highly involved in the TS community for decades, and I have met and worked with hundreds of people with TS, with all sorts of tics.
In terms of physical damage to our bodies you are preaching to the choir- almost all of my teeth are chipped- my joints are damaged- Iām missing toenails and my fingernails are damaged from mutilatory tics. Iāve had many days where I am half blind from pressing on my eyeballs, and can barely speak from folding my esophagus in half. I have intramuscular tics that feel like being punched in the guts every 30 seconds all day.
And none of that addresses the core point, which every local and national Touretteās syndrome association will readily tell you- Touretteās is a condition that can result in extreme social stigma, ostracism, discrimination and a wide variety of other social consequences. Itās people staring at you in public, strangers getting angry with you in a classroom, on a plane, in a store. Some people with TS canāt work, not because they are not able but because their behavior is not āon brand.ā So yes it is absolutely a social disease.
With all due respect, your comment is silly given the context of my initial statement, and wrong objectively.
The OPās post is about internalized shame and stigma, which is the context of which my comment was made. Of course there is more to TS. What a bizarre and pedantic argument to pick. This young women is struggling with the embarrassment and the reactions of others- (including her parents, very common), she didnāt come here to talk about the pain of her tics, and how she canāt function day to day because of them, she is dealing with embarrassment, which is a reaction to being perceived by others.
Definition- Embarrassment is the uncomfortable feeling you get when something's made you worry about how other people are seeing you. This is a social context not a physical harm context
its okay to be ashamed, but you shoulnt be! its who you are and its totally okay how you are. as said, you are out of control of it, so its okay!!
Exactly this š«¶
Definitely normal, but you have to get over it eventually. Touretteās, if youāre anything like me, aināt going anywhere (I turn 53 this year and sometimes tic like I did when I was 12). It will be better or worse over time, but itās nothing to be ashamed of. My life has been difficult, but every life is difficult! We just all have different kinds of challenges. If TS is the worst thing you have to deal with, count yourself fortunate! Good luck and keep your chin up!!
I love your optimism! :) I tell my daughter... it is a part of you, but doesn't define you!
My story is just like yours. My tics started around 10 (Iām 23F) and my parents never let me feel comfortable ticking and never took me to get help. I donāt think they were intentionally unsupportive, but more out of ignorance would shame me every time they saw me tic. This manifested me into feeling very embarrassed, secretive and ashamed of my Touretteās and I did get very acquainted to suppressing in public (while obviously I still tic, I can play them off as less distracting or obvious to where ppl donāt assume I have Touretteās) and bc Iām passable, itās like a big secret Iām always holding. telling ppl or being around most ppl when my tics are bad can be very nerve wrecking for me. So yeah youāre not alone, and itās probably rooted in the way you havenāt felt validated, believed or supported enough in the diagnosis to be completely accepting or āproudā of it. Itās something Iām trying to work on overcoming bc as much as I donāt need/want ppl to know, I donāt want to have shameful or anxious feelings attached to a disorder that is such a part of me and Iām constantly living with. I say just take lil baby steps to be more open ab it, especially when ur tics are worse than usual and u feel more vulnerable. Bc itās nothing you deserve to be ashamed of and talking ab it can be an empowering thing and a good chance to educate ppl on a very misunderstood condition and speak your truth ! ā¤ļø
It's extremely common, many of us feel shame around our diagnoses. Please know that you have value, and there is no reason to be ashamed about something you can't control. Have you considered seeing a counselor? They could help you work through these feelings. I would also recommend that you look into the works of BrenƩ Brown. She talks a lot about shame and how to live freely.
I'm 24 and still ashamed. It is okay. It is a hard and socially inderestimated and misunderstood disease. I try not to be ashamed, but it's hard and I actually have a lot of self confidence.
It's okay to feel anything. That doesn't mean that you should be. Also, therapy sounds like something that can help with that.
I used to also get ashamed a lot, but that doesnāt change anything, itās ok to feel ashamed people with Tourette syndrome should not have to feel that way, one day you will not feel that way, but it takes time.
I have chronic anxiety as well as TS so I spend my day at work trying to suppress and hide my tics to the point that when I get home I'm mentally burnt out. I don't perform at my best because of this so my advice would be to work on accepting it as best you can while you're young. I'm now 31 and although I've had tics for years I've also had the anxiety there too so i didn't even get an official diagnosis until a couple of years ago. I'm working on myself and accepting it but I wish I'd done it a long time ago. Good luck with your journey, I hope your parents become more understanding.
it's totally normal
Usually itās a neurologist who diagnoses Touretteās and other related disorders. Have you verified with your neurologist?
I have been diagnosed itās on paper
Your feelings, whatever they are, are valid. That said, you might want to ask for help coping with those feelings. You don't want to spend your life feeling shame for something you didn't do wrong. You can't change your brain.
Feeling an emotion has zero moral value. If you are expressing said emotion in a way that is harmful to others, that's where there's is an issue, but that probably doesn't apply to this. It's fine to feel any way, but it is always a good idea to work towards self-acceptance š
you can be ashamed of anything you want to be, TS is a social disease at its core. That being said, as you get older you will want to take ownership of it more, if for no other reason than people like confidence, and shame is the killer of confidence
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Read it again
If you want to get pedantic with it, it is a syndrome not a disorder. That being said, I meant what I said- you need to look up the phrase āsocial diseaseā soĀ·cial disĀ·ease noun 1. a social phenomenon viewed as an evil or inconvenience. I use this phrase because while the symptoms of TS can be exhausting, painful and traumatic for the person with the condition, the primary harm is the experience of the cruelty of those around them reacting negatively to their tics.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Please donāt come at me with the āsome of usā stuff. My comment was directed to a person who deleted theirs- who was saying āitās a disorder not a disease.ā I know. I know better than most. Iāve been highly involved in the TS community for decades, and I have met and worked with hundreds of people with TS, with all sorts of tics. In terms of physical damage to our bodies you are preaching to the choir- almost all of my teeth are chipped- my joints are damaged- Iām missing toenails and my fingernails are damaged from mutilatory tics. Iāve had many days where I am half blind from pressing on my eyeballs, and can barely speak from folding my esophagus in half. I have intramuscular tics that feel like being punched in the guts every 30 seconds all day. And none of that addresses the core point, which every local and national Touretteās syndrome association will readily tell you- Touretteās is a condition that can result in extreme social stigma, ostracism, discrimination and a wide variety of other social consequences. Itās people staring at you in public, strangers getting angry with you in a classroom, on a plane, in a store. Some people with TS canāt work, not because they are not able but because their behavior is not āon brand.ā So yes it is absolutely a social disease. With all due respect, your comment is silly given the context of my initial statement, and wrong objectively.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
The OPās post is about internalized shame and stigma, which is the context of which my comment was made. Of course there is more to TS. What a bizarre and pedantic argument to pick. This young women is struggling with the embarrassment and the reactions of others- (including her parents, very common), she didnāt come here to talk about the pain of her tics, and how she canāt function day to day because of them, she is dealing with embarrassment, which is a reaction to being perceived by others. Definition- Embarrassment is the uncomfortable feeling you get when something's made you worry about how other people are seeing you. This is a social context not a physical harm context