Anyone Have Tourette's (or Know Someone Who Has It)?
I have mild Tourette's. I have vocal tics (meow/roaring, moaning, and other embarrassing and only partially controllable sounds), verbal tics (saying random words, verbalizing part of a conversation I'm having in my head- you know how we all daydream about convos we want to have! Mine just get verbalized sometimes), and physical tics (nothing too specific, just movements at random and such).
My tics are usually hideable, but the more stressed I get, the more noticeable they become. I "rawr-ed" in the bathroom the other day and my mom heard it. It was kinda embarrassing.
Does anyone else deal with Tourette's, or know someone who does? Please use this as a safe space to share your stories and anything you've learned, anything that helps, ways of getting people to understand and accept your tics, or anything else you'd like! <3
@jesusredeemedme2425
I searched articles on it, and it is said that one of the ways to manage vocal tics is by listening to music. This is a great way to help block out sounds and other distractions.
(Also, is it possible to share to your mom about it, when you are ready? I think she will understand, and not judging you for having tics)
@RachelListener
I never thought of that… It’s a great idea! It must help calm the mind. My tics get worse when I’m thinking about something with emotion involved lol
She actually does know about my Tourette’s. I just try to hide my tics from people in general because it’s embarrassing. lol!
@jesusredeemedme2425
That's understandable, because you were nervous & then the tic got even more frequent. I'm glad that your mom knows and understood. It is okay to try to hide it from people because not all people will be sensitive (sensitive as in being aware) about others struggle.
@jesusredeemedme2425
i went to grade school and was best friends with a girl who has Tourette’s. She had a rough go of it. Back then I didn’t really understand what tics were but everyone used to make fun of her and bully her. Now that I understand what it was I’m really glad that I accepted her and never tried to hurt her feelings. She was a great friend despite her Tourette’s. I need to look her up on social media and see what she us up to these days.
@Kristynsmama
You sound like an incredible friend, and like someone I would love to be friends with! Being unconditionally loved, despite being different, is such an amazing blessing <3
What made you accept her and love her when everyone else bullied her?
I love that!! Reconnect with her, tell her how much you love and respect and accept her no matter what <3 <3 <3
@jesusredeemedme2425
i would love to be Cups buddies here onn7 cups. Please feel free to reach out to me anytime. I don’t have Tourette’s, but like Icy, I have muscle spasms that aren’t controlled as a result of a different condition. So I do get it to an extent. And I understand what it’s like to have something chronic.
@jesusredeemedme2425 I do not know anyone with tourettes. Well except my one good friend has it, kiara (you)
I heard about a guy who had it really really r bad, he could hardly get a sentence out, God bless him ❤ but then he sang with a powerful opera voice. And he sung beautifully. For some strange reason he said touretts doesn't happen when he sings.
it's really strange how illnesses can effect us all in so many different ways. Well like I said I don't know anyone who has it, but I can hug you and listen to you and support you in any way I can ❤❤ sends my love to you ❤
@Tinywhisper11
Awwww the first part tho!!!!! My heart <3 Thank you!!!! <3 You made my day :)
My mom used to go to church and school with a guy who had a really bad stutter… But he didn’t stutter when he sang. He had a beautiful voice <3
I love being loved and supported!!!! Thank you <3 I don’t fully understand being in a wheelchair either, just like you may not fully understand Tourette’s (neither of us having experienced it), but I will support you and love you as much as I can as well <3 <3 <3
@jesusredeemedme2425
hi! First off thank you for sharing your journey with us 🥺 its really hard to do and for that i am proud of you.
I dont have tourrettes (sorry i cannot spell 😅), but i am neurodivergent (my old therapist and i talked about it, im not allowed to get tested officially but she said it seems like some sort of mix of OCD, ADHD or autism) so i have stims. When i get really really stressed or excited or happy i can't really control them. A lot of mine are vocal stims (meowing, roaring, clicking my tongue, saying "can i get a hiyaaaa", saying bonk, saying ***, and these noises from this meme called dog of wisdom) but I have some physical ones too (snapping, hand flaps, really fast blinks, leg shakes, making this dumb finger heart {this one i never even realize im doing it till i look at my hands, making a biting gesture, and jerking my head out really fast.) and i feel for you on the embarrassment. You aren't alone though ❤️❤️ we can be weird together
@AvyIsKing
Thank you <3
Why aren’t you allowed to get tested?
That really does sound like Tourette’s…
Awwww we can TOTALLY be weird together!!! <3
@jesusredeemedme2425
i cant be tested because i want to work in the medical field, and a lot of places only want neurotypical people. its really bad to have a surgeon who might meltdown if things go weary
it does, but most of my stims are voluntary :0 and im no doctor (yet) so i really really have 0 clue
yayyyyyy weird twin :0
@jesusredeemedme2425
do you have any hobbies that hep your tourette's? i know that sounds weird but when im reading or crocheting, its the only time i am quiet and not stimming xD
@AvyIsKing
Would the tics make it hard to do surgeries?
How are they voluntary?
Nothing really. They get worse with stress, that’s about it lol
@jesusredeemedme2425
yeah they would
and my brain just does them, but i know they are happening. So im subconsciously saying im overwhelmed or happy or scared or stressed so im going to do *this* to ease it. I usually cant control what stim i choose to do for the time being
@jesusredeemedme2425
Thank you for creating this safe space for us to share our experiences with each other. I have Tourette's and functional neurological disorder.
It's similar for me. The more stressed I get and the more I want to hide my tics, the more tics seem to queue up and the more difficult it becomes for me to hide them. I get that they can be embarrassing sometimes. As those tics tend to be rather random and out of the ordinary, people usually don't understand them. So there's always this pressure on people like us who stand out because of our tics. How do yo you usually cope with that embarrassment?
May I ask how your mother usually treats you regarding those tics?
What's most frustrating for me is when people in a professional environment can't seem to understand my conditions. For example, just recently we've had a big meeting with several different representatives of a company we create software for and the leaders of each team from the company I work for. I attended that meeting as well and reminded everybody of my Tourette's and possible seizures due to my FND. Yet, some people were still annoyed whenever I had a vocal tic or couldn't answer immediately. Somebody even asked me once whether I could stop moving and shut up. There's nothing I can do about my conditions, and feeling like people would prefer to have those meetings without me sucks a lot. I'd expect more of people in a professional environment. Still, that's the norm for me, and I've kind of come to terms with that.
One of the key factors influencing both my Tourette's and seizures, is sleep. If I don't have enough sleep, my following days will be worse. Period. Some days might still suck despite getting enough sleep, but the inverse is always true for me.
On top of that, grounding exercises have helped me to at least deal with that downward spiral of being stressed about my tics and then ticking even more because of that.
How do you tend to deal with your tics in public or at work?
@Ofenkartoffel Thanks for sharing such a detailed experience so that we can all understand more about the condition.
Listening - One Step At A Time! - Written with no AI!
@Ofenkartoffel
You’re welcome! <3
What’s FND? I’ve never heard of it.
Luckily, most of my tics are hidden, so there hasn’t been much in the way of embarrassing incidents lol
My mom will just respond with a gentle sound when I tic most of the time, or ignore it. I like both. <3
Tell them, “Sorry, I can’t, I have a medical condition that’s incurable.” That will shut them up. Lol!
Lack of sleep makes everything worse for me lol
Grounding exercises?
I honestly just try to hide them. No real techniques. lol!
@jesusredeemedme2425
FND means functional neurological disorder. Most of the times, it doesn't impact me, but sometimes parts of my brain don't work like they should. It's different for everybody. But for me, it can include that I can have seizures, paralysis, or impaired vision. And the duration of these effects is different as well. Sometimes they're only a couple of hours. Sometimes it's one or two days. I like to explain it as my brain gambling whether or not and what kinds of neurological difficulties I'll have for each day.
I'm glad your mother's reactions are so calm and gentle. It sounds like she's just accepting you. Which is great! <3
Unfortunately, that often won't shut them up because they don't understand a lot of times. Some even seem to think I might make things up. Given that my FND can be so random, I can't really blame them. Still, it sucks.
These are techniques that can help to calm our mind and to get in touch with our surroundings and our mind again. I like these quite a lot: https://www.healthline.com/health/grounding-techniques#mental-techniques
@Ofenkartoffel
Wow, that sounds rough! Do you just have to endure it, or does anything help?
She’s incredible and I’m so lucky to have her <3
Can you carry around a doctor’s note?
Ooh I like those ideas <3
@jesusredeemedme2425
There's hardly any research about it, so there isn't much that can be done, currently. But I've learned to live with it and work my way around it.
Hm, yes, I could carry around a doctor's not. Yet, I still think that those people might still not accept my behavior. I just have a feeling that they may think I'm abusing my condition to fake it. After all, they're not very trusting people anyway.
I have a few very imperceptible physical tics my whole life that I just hide like I'm stretching or whatever. My eye tics when I'm extremely stressed, and I start struggling with picking my skin and hair. I used to bite my nails pretty bad. I so relate to the thing with repeating things people say, usually it happens infrequently enough no one notices it much. And rehearsing conversations.
I can spend a lot of time doing that when I'm in a bad headspace. My OCD tendencies were much worse before I started doing meditation and discovered radical acceptance and kinda learned to not have so many obsessive thoughts and fixations because I was better at letting go of control. I have a lot of coping skills I use mentally to remind myself I'm not my thoughts, or releasing them, like this one meditation practice where you imagine them drifting away like leaves on a stream or something. At first I had to work really hard to manage it, I would meditate six times a day, and had all sorts of rituals to practice it but now I can just do it at will any time I get anxious I just touch my heart centre and breathe and I can get the stuff in me to settle down because my mind knows what I'm asking it to do with that stuff.
It's been easier since I got back into using clonidine. It just subtly takes the edge off everything spiky in my brain. I get more things done than I used to do without it. Valerian also helped me be less anxious which also helps with that. I really wish I could get something for my adhd cause that would do a lot.
I was diagnosed by a doctor when I was 11 but nobody ever really taught me how to cope with it. I'm 41 now and for the first time I'm really trying to work on taking better care of myself where this stuff is concerned. I guess my symptoms got worse after my burnout so now I just have to figure it out where before I could just mask.
I'd love to connect with others who have really subtle invisible or easy to mask tics who struggle to notice when they need more support because you're so used to masking. :)