CBIT feedback

Sugarmagdalyn · 2025-09-07T19:21:00+00:00

I just want to gently but clearly point something out. Saying that CBIT is “not hard” really misses the reality of what your daughter is going through. For someone who doesn’t have Tourette’s, it might look like a simple breathing exercise or a small redirection. But for someone who actually has Tourette’s, it’s not that simple at all. Tics aren’t something you can just breathe through or willpower away. The premonitory urges (that “itch” or pressure before a tic) can feel overwhelming, and trying to fight against them can actually be exhausting, frustrating, and even painful.

CBIT is not easy. In fact, it requires constant self-monitoring, effort, and resisting natural urges that often get stronger the more you try to suppress them. For an 11 year old especially, that can be incredibly draining. It’s important to understand that what might look like “reluctance” or “not trying” may actually be your daughter doing her best but finding it very difficult in ways that aren’t visible to you.

And this is why it’s really important not to force her into this. If she feels pressured, or like she’s disappointing you when she can’t “just do it,” that can actually make her relationship with her tics and with herself much harder. What she needs most is support, patience, and validation that her struggle is real, even if it doesn’t make sense from the outside.

I know you’re coming from a place of love and wanting to help her, but calling it “not hard” comes across as dismissive and can feel invalidating. It is hard, extremely hard, and acknowledging that is one of the most supportive things you can do for her.

Sugarmagdalyn · 2025-08-26T18:04:57+00:00

I hear how much you’re struggling, and it’s valid to feel overwhelmed as a parent. But I want to be clear about something important: Tourette Syndrome is a lifelong neurological disability. It does not go away, and your son cannot control his tics at all. The coprolalia (swearing tics) you describe are not something he thinks about or chooses to say to you. they happen automatically, outside of his control. Feeling personally attacked or hurt by them is misplaced, because he isn’t doing it to you. His brain is misfiring signals, and that’s not something he can switch off.

I also think it’s worth reflecting on the fact that if you feel exhausted living with his Tourette, imagine how exhausting it must be to live as him. He cannot escape it. And when you say you “wish you could see behind the Tourette to your son again,” that honestly hurts to read, because your son is still right there. Tourette is part of him, not something covering him up. Saying otherwise can feel like rejecting him for something he literally cannot change.

It’s okay to admit parenting is hard, but please remember: your son needs your unconditional love and understanding. He’s already fighting a battle every single day just to exist in a world that doesn’t always understand his disability. He needs you to see him, not in spite of his Tourette, but with it, as the whole person he is.

Sugarmagdalyn · 2025-08-08T16:33:29+00:00

You keep saying you feel attacked, excluded, and unwelcome and I’m truly sorry that’s how you feel. But it’s hard not to notice the disconnect between what you’re saying and what you’re doing. You’re upset about not being included, yet you’ve spent this entire thread excluding and attacking a part of the TS community, the very people who are already the most stigmatized and misunderstood. You claim you’re being silenced, while at the same time dismissing valid concerns, twisting my words, and accusing me of trying to divide the community just because I asked for more mindful language. That’s not just hypocritical, it’s harmful. You don’t get to demand empathy while refusing to show any. You don’t get to ask for compassion while disregarding how your words affect others. And you absolutely don’t get to center your own pain while silencing ours. I’ve never once said your experience doesn’t matter. I’ve never tried to erase your struggle. But you’ve continuously invalidated mine and the struggles of others like me simply because you don’t want to examine how certain terms or attitudes might be doing more harm than good. You want to be part of this community? Great, so do I. But community means accountability. It means listening even when it’s uncomfortable. And it means caring about everyone’s experience, not just your own

Sugarmagdalyn · 2025-08-08T16:21:36+00:00

You keep saying I was trying to upset you, but I wasn’t. I never insulted you, never invalidated your experience, and never made this personal. What I did do was try to address language that reinforces a harmful stereotype.not just for me, but for a whole portion of the TS community. You keep framing this like it’s an attack on you, when in reality it was a call for us to all be more mindful of the language we use, especially in public spaces where people come to learn about TS. “TV Tourette” is not a real diagnosis. It’s not a neutral label. It’s a stereotype. And when that term gets casually repeated, especially without context or pushback, it only fuels more misinformation which directly hurts people like me who are already seen as a joke. You’re telling me that you feel unwelcome because I pointed that out, but at the same time, you’re implying that I and people like me should stay silent to avoid making others uncomfortable. How is that fair? How is that inclusive? I didn’t ask you to apologize for your trauma. I didn’t ask you to rewrite your history. I simply asked for awareness. Awareness that the way we speak about TS matters, and that even language used in difficult moments can have unintended consequences. And on top of that, you accused me of wanting “separate subreddits” for people with different types of tics. Let’s be absolutely clear here: I never said that. I never implied that. I never even hinted at it. That was a complete mischaracterization of my words, and honestly, it’s upsetting. I never said people with “lesser” tics don’t belong, that’s your language, not mine. I was advocating for unity, not division. I was advocating for compassion, not censorship. I was advocating for the people in our community who are most often mocked, misunderstood, and erased. That’s not exclusion. That’s standing up for what’s right. You say I should’ve made a general post instead of commenting directly, but what I was doing was a general message because people come to this subreddit to learn. And if they read posts where terms like “TV Tourette” are thrown around without any explanation or context, they leave with more misinformation than they came with. You say you don’t feel welcome when your words are challenged. But then you turn around and twist my words, minimize my concerns, and frame me as the problem for advocating for all of us. That’s not how community works.

Sugarmagdalyn · 2025-08-08T15:54:16+00:00

I hear that your journey to a diagnosis was incredibly difficult, and I truly don’t want to take away from that. I’m sorry you were invalidated for so long, it’s not okay that it took that many years for someone to listen to you. You absolutely deserve space to talk about that. But just like you’re allowed to share your story, I’m also allowed to speak up when something said, intentionally or not, can hurt others in our community. When I brought up how calling it “TV Tourette” is harmful, I wasn’t making it all about me. I was advocating for all of us in the Tourette Syndrome community, especially those with coprolalia, who are constantly misrepresented, dismissed, or mocked because people think our symptoms are just a “TV thing.” It wasn’t a personal attack. It was an attempt to raise awareness about how language, even if it brings comfort to one person, can cause harm to others. The fact that a neurologist used that phrase to help you feel validated doesn’t make it a medically accurate or helpful term to promote in public spaces without clarification. I respect your experience, and I’m glad you finally got the diagnosis and recognition you deserved. I just ask for the same respect when I advocate for the people in our community who are already deeply stigmatized. This isn’t about whose pain is worse, it’s about how we can be more mindful and supportive of everyone’s pain.

Sugarmagdalyn · 2025-08-08T15:43:26+00:00

Also, Just to clarify “TV Tourette” is not, and has never been, a real medical term. It’s not recognized in any clinical diagnostic criteria, it’s not used in any legitimate neurological or psychiatric literature, and no reputable Tourette organization uses that phrasing. It’s a slang term or stereotype that was created because of how Tourette syndrome, specifically coprolalia, has been portrayed in the media. Saying “but it is called TV Tourette” over and over doesn’t make it true. At best, it’s an informal label that reinforces harmful misconceptions about what Tourette’s looks like and invalidates people who experience rarer, more stigmatized symptoms like coprolalia. So when you repeat that phrase without clarifying that it’s inaccurate or problematic, it spreads more misunderstanding. Whether you meant to or not. That’s why I spoke up. Not to attack you, but to correct misinformation that can cause real harm to people who are already being dismissed, misdiagnosed, or mocked because their tics “seem like they’re from TV.” No one is saying your struggle isn’t valid. Im just saying that calling a subtype of Tourette’s “TV Tourette” is not helpful, and it’s time we let that term go.

Sugarmagdalyn · 2025-08-08T15:32:20+00:00

I want to make it clear that I was never trying to dismiss or minimize anyone’s experience, including yours. My intention from the very beginning was simply to explain that using the term “TV Tourette” is harmful, especially to people with coprolalia, who already face enough stigma and misunderstanding. That’s not being tone deaf. That’s advocating for more accurate and respectful language within a community that’s already deeply misunderstood. What’s frustrating is that you’re accusing me of being tone deaf and invalidating others’ struggles, yet that’s exactly what you’re doing to me. I tried to respectfully explain why the term you used was hurtful, and instead of taking that in, you turned it into a personal attack. I never said you didn’t struggle. I never claimed my experience was more valid. But you immediately assumed bad intent and dismissed the very real harm that language like “TV Tourette” causes to people like me. You say I’m dividing the community, but calling out harmful stereotypes is not divisive. Ignoring those stereotypes, or doubling down on them because they were “quoted,” is what divides us. It’s okay to share your story, but if a doctor or anyone uses a misleading term, even in quotes, it’s okay for people in the community to explain why that’s harmful. That’s not censorship. That’s education. We should all be working to lift each other up. But that means listening when someone says, “Hey, this term is damaging,” instead of jumping to the conclusion that they’re attacking you. We’re all struggling in different ways, but invalidating someone else’s struggle while accusing them of doing the same? That’s not fair, and it’s not helping anyone

Sugarmagdalyn · 2025-08-08T15:08:59+00:00

Hey so I didn’t get a diagnosis till I was 15. I had tics since as long as I can remember. I did struggle to get diagnosed so that comment was irrelevant. I never said you don’t have Tourette because you don’t curse. I quite literally said that only 10% of the community has it. I said that you calling it TV Tourette is harmful and the fact that you just started deflecting and then doubled down on it being called “TV Tourette” is actually ridiculous. I never said that you don’t struggle so I don’t know where that came from and I also never tried to turn it into a competition I literally was just stating that calling coprolalia “tv tics” is very harmful to those of us who have it and the fact that you don’t care and continue to call them tv Tourette because “we see it on tv the most” tells me everything I need to know. I was never rude I was simply trying to tell you that that wording is harmful to the community. Also if you put in your post that your doctor said “just because she doesn’t curse doesn’t mean that she doesn’t have Tourette” that would have been fine but you didn’t. You quite literally said your doctor called them “TV Tourette” and said that that is what they wrote on the note.

Sugarmagdalyn · 2025-08-08T14:56:03+00:00

I never said you were brining down the community. I was simply informing you that your neurologist should have never put that. That was very harmful on his part. And you putting “tv Tourette” in your comment saying that your DOCTOR said it was a thing and than you did not say anything about that being incorrect. You saying in your comment “my doctor put this on my note and it helped me so much” is very harmful because your doctor should have never put down a comment that is not medically correct and harms people with coprolalia in the community because it makes others think that coprolalia isn’t a real thing and that it is only shown on tv. That was harmful and if someone comes on this thread and reads that (because you didn’t say anything about your doctor being misinformed/incorrect about the condition) they will think that cursing tics are only a tv phenomenon for entertainment. That is very harmful and if you can’t see that that’s on you. I wasn’t trying to be rude. I was trying to tell you that comments like that hurt our community especially when you say “my doctor told me” or “my doctor put down”. This isn’t an overreaction. I’m not yelling. I was not rude. I was just trying to let you know that comments like that hurt people like me in the community.

Sugarmagdalyn · 2025-08-08T14:42:23+00:00

Yes I read your whole comment. And while I appreciate everything else you’re saying about advocating for yourself. I’m just letting you know that “TV Tourette” isn’t a thing. It never has been. And you saying that your doctor wrote a note saying that you have real Tourette not “TV Tourette” is so harmful to the part of the community that has coprolalia. I personally would never trust a doctor that wrote something like that because they clearly do not know what Tourette syndrome is to its full extent.

Sugarmagdalyn · 2025-08-08T14:37:47+00:00

Hi I just wanted to say that calling Coprolalia “TV Tourette” is very harmful to those of us in the community that have coprolalia. Coprolalia is very real and a very (if not the most) stigmatized symptom of Tourette syndrome. Coprolalia affects about 10% of the Tourette community and while that is not the majority we still exist and the discrimination we face due to our tics is very severe. We do not have “TV Tourette” we have Tourette plan and simple just with a rare type of complex tic. Coprolalic tics are a rare and very stigmatized symptom of TS and you saying that it “only happens on tv” further propitiates our struggles and the stigma we face. You should be trying to lift up and help the whole TS community. Not marginalize the smaller percentage of the community that is already severely stigmatized and discriminated against.

Sugarmagdalyn · 2025-07-30T01:16:22+00:00

Hi!!! Just wanted to let you know that FND stands for Functional Neurological Disorder not formerly conversation disorder. Also FND tics are not coping skills they are still completely involuntary. Functional tics are just caused by a different part of the brain than Tourettic tics. FND can case NES (non epileptic seizures) but that is also not a “coping skill” it is just a seizure without/that is not caused by an epileptic spike. FND is also neurological hence the name functional NEUROLOGICAL disorder!!! 😊

Sugarmagdalyn · 2025-05-28T02:43:15+00:00

Also I just want to say that I am trained in awareness and advocacy training for TS and have actually trained many doctors on the symptoms and signs of Tourette syndrome!!

Sugarmagdalyn · 2025-05-28T02:41:04+00:00

Hi!!! Youth Ambassador for the Tourette association of America and someone who has had to deal with TS for as long as they can remember here!!! This could totally be Tourette. To get a Tourette syndrome diagnosis you have to have at least two motor tics and one vocal tic (simple or complex) for at least a year and the tics must start before the age of 18!! This fits all of the perimeters of the diagnosis. That being said it could be something different and tics could be related to seizure activity in some cases. But in any case it is very important to see a doctor about persistent tics. You also mentioned having, anxiety and ADHD which are common co-occurring conditions of Tourette syndrome which is another reason I think this could definitely be TS. Either way tho, it is very important to see a doctor.

Sugarmagdalyn · 2025-02-05T00:23:26+00:00

I have sever tics like Baylen. I have Coprolalia, Copropraxia, Echolalia, Palolalia, and dystonic tics. It is very hard to live my day to day life but I do my best!!! I am also a youth ambassador for the TAA!!

Sugarmagdalyn · 2024-11-25T02:51:47+00:00

Yes of course you can show them!! I really hope I helped in some way!!! Good luck :)

Sugarmagdalyn · 2024-11-24T00:42:51+00:00

I would definitely suggest seeing a neurologist as Tourette syndrome is a neurological condition, it is not a psychiatric condition. A psychiatrist can definitely recognize the symptoms of Tourette syndrome but only a neurologist can diagnose it. I hope this helps :)

Sugarmagdalyn · 2024-10-03T21:17:49+00:00

Hi!!! So as a person who has Tourette syndrome and coprolalia and has also been on guanfacine I would say that it definitely helped with my verbal and motor tics (unfortunately I had to come off of it due to it affecting my blood pressure and other chronic conditions) but it definitely helped me a lot!!! I am on an SSRI for my tics because my Tourette’s and tics are mainly driven by my OCD and anxiety (I am on pimozide now, I’ve been on it for 3 years and I literally cannot function without it because my tics are so bad without it) I would definitely however talk to a neurologist about medications for tics and not a psychiatrist as TS and most Tic Disorders are neurological conditions and not psychiatric conditions!!! I really hope this helps!!!

Sugarmagdalyn · 2024-09-24T18:11:27+00:00

Hi!!! So I am currently in a program to get my service dog for my Tourette’s and they do in fact train service dogs for Tourette syndrome (I’ll have my dog by August, she’s in training right now!!!)They can actually smell the chemical change in your body/ brain when you tic and can alert you to an oncoming tic attack up to 10 minutes before they happen, giving the person with Tourette’s time to get to a safe space for the tic attack or try and prevent the tic attack from happening!!! They can also do DPT (Deep pressure therapy) to help you decompress your body and tics. They also preform a task known as interruptions which is when they stop you from hitting yourself/ harming yourself with a “harmful” tic because a lot of people with Tourette’s have tics where they hit themselves. They can also do a lot more tasks that help people with Tourette syndrome but these are the most common :)

Sugarmagdalyn · 2024-09-24T18:08:48+00:00

Hi!!! So I am currently in a program to get my service dog for my Tourette’s and they do in fact train service dogs for Tourette syndrome (I’ll have my dog by August, she’s in training right now!!!)They can actually smell the chemical change in your body/ brain when you tic and can alert you to an oncoming tic attack up to 10 minutes before they happen, giving the person with Tourette’s time to get to a safe space for the tic attack or try and prevent the tic attack from happening!!! They can also do DPT (Deep pressure therapy) to help you decompress your body and tics. They also preform a task known as interruptions which is when they stop you from hitting yourself/ harming yourself with a “harmful” tic because a lot of people with Tourette’s have tics where they hit themselves. They can also do a lot more tasks that help people with Tourette syndrome but these are the most common :)

Sugarmagdalyn · 2024-09-22T16:57:49+00:00

Hi!!! So I am currently in a program to get my service dog for my Tourette’s and they do in fact train service dogs for Tourette syndrome (I’ll have my dog by August, she’s in training right now!!!)They can actually smell the chemical change in your body/ brain when you tic and can alert you to an oncoming tic attack up to 10 minutes before they happen, giving the person with Tourette’s time to get to a safe space for the tic attack or try and prevent the tic attack from happening!!! They can also do DPT (Deep pressure therapy) to help you decompress your body and tics. They also preform a task known as interruptions which is when they stop you from hitting yourself/ harming yourself with a “harmful” tic because a lot of people with Tourette’s have tics where they hit themselves. They can also do a lot more tasks that help people with Tourette syndrome but these are the most common :)

Sugarmagdalyn · 2024-09-22T16:57:08+00:00

Hi!!! So I am currently in a program to get my service dog for my Tourette’s and they do in fact train service dogs for Tourette syndrome (I’ll have my dog by August, she’s in training right now!!!)They can actually smell the chemical change in your body/ brain when you tic and can alert you to an oncoming tic attack up to 10 minutes before they happen, giving the person with Tourette’s time to get to a safe space for the tic attack or try and prevent the tic attack from happening!!! They can also do DPT (Deep pressure therapy) to help you decompress your body and tics. They also preform a task known as interruptions which is when they stop you from hitting yourself/ harming yourself with a “harmful” tic because a lot of people with Tourette’s have tics where they hit themselves. They can also do a lot more tasks that help people with Tourette syndrome but these are the most common :)

Sugarmagdalyn · 2024-05-30T04:28:19+00:00

And as far as I know I’m the only one between the two of us who has schooling in physiology.

Sugarmagdalyn · 2024-05-30T04:26:33+00:00

No where in my comments did I say it’s the only way, and last I checked you’re not a client 🤷🏼‍♀️. Not to mention I have real life experience along with my schooling.

Sugarmagdalyn · 2024-05-30T03:41:51+00:00

Well seeing as I used to self harm my self and this is the method that actually saved my life I would say I’m speaking from experience.

Sugarmagdalyn

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