Do Tics Hurt? | The Painful Reality of Tourette's

It’s Tourette’s Awareness Month!! (15th May-15th June) 🙌🏻
Following the TA theme for 2024, this video talks about a hidden part of Tourette’s not many people see: the pain.
I’ve been in hospitals many times due to my tics, and they’ve caused me so many injuries. I have chronic neck pain, and muscle spasms every day and lots of people are physically limited by their tics.
It’s important we recognise and educate people on the fact that Tourette’s ISN’T just swearing or funny words-it’s a complex condition causing so many hidden struggles! 🧠
→ Tourette’s Action (our UK TS charity) is running a campaign this year called “Tourette’s Hurts” highlighting the pain and physical impact of our tics. Living with Tourette’s isn’t fun or easy, despite some of our tics seeming lighthearted or entertaining at times 🎗️
You can find their website and information below - they run yearly residential trips, and support groups, give talks and have lots of advice and info for people with TS & their families 💙👇🏻
www.tourettes-action.org.uk/
#touretteshurts #tourettes #tourettesyndrome #awareness #disability
don't forget to subscribe :) ♡
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✨ TIMESTAMPS✨
00:00 - intro
00:32 - tics are mainly physical!
01:38 - sensation of a tic
02:55 - chronic pain
03:38 - violent tics
04:42 - injuries
06:43 - suppressing tics
07:36 - TS is more than you think
08:24 - emotional pain
09:44 - summary
10:15 - live seizure episode
11:39 - Tourette’s Action
12:12 - outro
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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and orthostatic hypotension along with being autistic and queer! I also advocate for mental health.
2. What is FND? 🧠
‣ fndhope.org/fnd-guide/
3. What is Tourette's?
‣ www.nhs.uk/conditions/tourett...
4. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
5. What filming equipment do I use? 📸
‣ main camera* - amzn.to/3MW7v8w
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(*af links mean i make a small cut from any purchases, but this doesn't cost or affect you! 💕)
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✰ About Me ✰
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and living with Tourette's Syndrome, Functional Neurological Disorder (FND) and Orthostatic Hypotension. Tourette's syndrome is a neurological condition causing involuntary movements called tics.
I use my social media (TikTok, KZbin & Instagram) to advocate and raise awareness for my conditions and share what it's like living as a neurodivergent and disabled person. I am autistic, sharing my sensory struggles along with my experiences with mental health disorders.
I share the accommodations I use to help my daily life, and I'm an ambulatory wheelchair user documenting my life using mobility aids and how chronic illness symptoms vary from day to day!
I'm a musician with a song called "She's Mine" available on all streaming platforms, and I'm an artist with a small business and website selling my artwork, disability merch. I also love reading, writing, and I'm currently writing a novel and a book/memoir about my life!

[@Zara_Beth]

i’m back!! random monday upload because i’ve had to take a few weeks off when my flare-up got pretty bad but i finally got this edited today! 🫶🏻 feeling thankful to be able to sit up, get out in my wheelchair and finally get back to editing/gaming and chilled activities today 🥹👏🏻

[@Misszebyrobloxvideos756]

thx for this video i also have tics and at school and public i try and keep them in and it does hurt i also have neck tics when i try hold them in even after it still hurt a bit and stuff i only try and tic in the car and at home where i dont feel awkward cause i just feel like weird in public and school having 4 special needs my tics are one of them tho but i honestly hate tics but when i hold the neck thing in i then start blinking and my arms feel like they are going to move and stuff and i thought i was the only one who feels pain in my neck tho

[@BigBlue-xt9ss]

Glad your doing a little better get well soon! ❤❤

[@maurozanchetta648]

I'm so happy you feel better! Great video, you are our hero!

[@BilliesCraftRoom]

Sounds like ballistic stretch, does it make you more susceptible to repetitive strain injuries? Chronic pain suffered here too

[@Misszebyrobloxvideos756]

Zara me my mum and dad think my tics are currently acting up cause of stress its just the uhm neck tic tho cause today 06/06/24 my cat passed away AND HE WAS MY FAV CAT so i have my other cat coming to me every time im downstairs but from now on im just going to be sad on this day each year i miss the poor cat so we think that may be the reason of my tics stress but i dont feel stressed but we think thats why cause of what happened to the cat

[@JanealJohnson]

I met a young lady years ago, that had to wear a mouthgard and was not able to drive. We were walking with her and she would stop and turn around and go the other way for a few steps and then jog back. She was at risk for walking out into traffic. She didn't swear, but she did shout "I love you" and people on the bus were not happy with her. :(

[@vanillaoreo251]

That's always been a major fear of mine because my tics go along with stress in my life. I am the stay at home parent, and being unable to drive would ruin my family

[@swingbat6776]

I’ll never understand people who think Tourette’s (or any other chronic/neuro condition) is fun or funny. None of this looks like fun to me. It looks painful and tiring. Thank you for advocating and educating kindly and effectively! ❤

[@Em_theDino13]

I'm so glad to see this adressed. I don't have Tourettes (my tic disorder hasn't been diagnosed) but i do have really bad tics and they can cause me so much pain! I have the same neck tic and it is so difficult.

[@Scar_6667]

Same

[@ArsonTheShroom]

Sorry to anyone who has tourette's here :( I personally don't have tourette's but I hope that by educating myself with videos like yours I can help anyone who i do meet with tourette's feel safer and less alienated. I have so much respect for you.

[@Graeme408]

Zara Beth, do you realize how articulate you are? Even with Tourette’s you are so articulate that you might consider doing voice-overs for others. The tics can always be edited out, but clear articulate voices are few and fare between. I appreciate what you are doing, I learn from every one of your videos .

[@PalDuckenson]

Before I start, I will just say that please don’t make bad comments to this. I am already getting bullied at school and my mental health isn’t the best. I have been diagnosed with Tourette’s for almost a year now, and the amount of injuries I have had because of them is very bad. I also have the other condition that can come with Tourette’s that makes you swear as well. I have tons of bruises, scratches and cuts everywhere because of my tics which can make going to places hard as many people just think I’m s3lf-h4rming which I’m not. I have had to answer the question “am I hurting myself” so many times I now hate that sentence. I just hate that people think Tourette’s is some funny and jollying when it really isn’t. The pain, stress and embarrassment you get when you have Tourette’s is unbearable, and no one ever really understand how hard it is to have tics. I am also always nervous of not letting others in my classes concentrate and be able to do their work. With my Tourette’s my mental health has never been good since my tics started at the age of 8. It also just makes it hard for me and my family to go out and also when I have a tic that may make me hit my family I just feel so terrible. I wish there was more understanding on the other side of Tourette’s and tic disorders, not just the side of saying funny things.

[@Chris-bfbdk778]

I feel you so much, I have that too. My tics got better since I got some terrible pills against my tics but I had and still sometimes have very bad seizures cuz of them, I used to have seizures everyday and I had to stop taking those pills, i feel like they changed my brain chemistry, my tics also feel diffrent then before. I also had a lot of bruises etc cuz of my tourettes and hit my bf. For some reason my tics got a lot better for now and idk if that's a good or bad sign. As I said I sometimes have seizures but compared to back than it's very rare, I used to have them multiple times per day for almost an hour sometimes, it was extremely exhausting and painful. Now my tics get much worse when they get triggered and I'm afraid they'll be back some day, as bad as they were almost a year ago, I was anxious about sitting next to someone in public transport, I had to quit my job, I had terrible thoughts that I won't mention here cuz I thought my life is over, my biggest help was and is my partner, they made it so much easier for me and I wish everyone who goes through stuff like this can have someone who they can trust and get support from.

[@EtchySketchy06]

I don't have Tourette's but I sometimes have neck tics and tremors in my hands. I'm sorry that people are so awful to you about your tics.

[@wickeddummy]

You are a wonderful person, don't listen to anyone who says something mean to you. Take care, you got this ✌️🙂

[@Chris-bfbdk778]

​@UrLocalSpicyNugget13 I have tremors sometimes too, idk what it is and if it's connected to my tourettes but today i got an eyebrow piercing and my head was shaky and ticking a lot and for me holding something very tightly in my hands helps. Also one time I remember I got pretty bad tremors in public, it wasn't really cold but I started shaking out of no where, I was alone eating breakfast at a Cafe and I started shaking with my whole body to the point I couldn't hold my cup properly and I left embarrassed cuz an old man started staring at me I think

[@Chris-bfbdk778]

maybe they are normal, because I don't always notice that I'm nervous but my body does and it reacts to it

[@dennisjerb]

Thank you for your openness about Tourette’s Syndrome and FND. Zara you are a gift to humanity.

[@dennisjerb]

@UCuTsFckHTfVfoh8UlYJ4IxA I am so impressed with your maturity and insightful message on your channel. I am a retired university professor of chemistry (Ph.D.). I taught for nearly 40 years. I have 3 living adult children (between 35 and 40 years). I lost a son 7 years ago to a fentanyl overdose. I have been an educator my entire life and admire persons who are interested in furthering knowledge. Zara, you are doing a wonderful service to those of us who are not knowledgeable about Tourette’s Syndrome, FND, autism, etc. please know your message and delivery are exceptional. You are having an impact. Please keep doing what you are doing. ❤️

[@SunEeveeREAL]

Hi I was Just diagnosed with Tourette’s today, I’ve been watching your videos for a while now I was aware of it all so when the neurologist brought up Tourette’s and FND I knew what she meant, I just want to say thanks for being amazing

[@karigiles8605]

It's like an itch you can't scratch. That's what my brother, at like under 10, put it as. So glad to hear you say that as well it's an itch. I have it. Thankfully mine isn't as severe as others are, but the pain when it goes on for too long is totally annoying. That neck twitch though! That's an apparent all around tic! One of the greatest indicators that one has Tourette's in the first place 😅

[@BeKindAllTheTime]

I don't have Tourette's but my neck sometimes bends back or off to the side when it's not supposed to. It's more annoying than painful, and I can usually move my head back to where it's supposed to be in a few seconds. It also seems like some kind of stim, because it happens more often in overstimulating/uncomfortable environments. Sometimes, I get (painful) neck spasms when I yawn. They bend my head forward, and I have to wait for the muscles to relax again before I can do much of anything else. I can't imagine what it's like to have to go through painful neck twitches multiple times a day. ❤ That neck crack sounded really painful 😢

[@aquaidelic6424]

I have something similar however, it has slowly developed into tics these are caused by my anxiety and ADHD. So I tic when I'm over/under stimulated, overtired, bored or have been sitting still for too long, when I'm anxious or when I'm stressed. They started with small motor twitches and neck twitches and have now become worse and I have now developed vocal tics. I relate to this video a lot and I'm so glad she has talked about this side of tics.

[@earth-]

@@aquaidelic6424 Just for ur information, anxiety and ADHD can’t cause tics, you can most definitely get twitches but full on tics are caused by an underlying tic disorder. Anxiety, overstimulation, boredom etc. can all worsen tics, so you might only notice them when you’re experiencing those things, but anxiety/ADHD it’s not the root cause :)

[@deinodinosuchus]

a big difference in stimming versus tics is that stims are (usually) voluntary! stimming is used to regulate the nervous system which is why a lot of people stim while uncomfortable or happy (either way, big emotions can = big stims) but tics are not voluntary which sounds more like what you’re describing! you can have tics without having tourette’s i believe

[@BeKindAllTheTime]

@@deinodinosuchus I did some research and found out that you were right! It seems that tics which don't result from a tic disorder can be caused by anxiety, which may be why I thought it was a stim. There also seem to be a lot of people who have tics but don't have Tourette's either because they don't meet the criteria for a diagnosis or because the tics are resultant of another disorder, such as Tardive Dyskinesia. I have also realized that caffeine definitely does not help with my tics, which is a similar observance to a study done on adults who have tics 😅

[@aquaidelic6424]

@@earth- I've done my own research and also been told by many doctors and phycologists that my tics are a symptom of my Anxiety and my ADHD stimulant medication. I only experience my tics at these times and on my stimulant medication. I will however, go back and check with my doctor about a tic disorder just incase thank you!

[@MJslifeandstuff]

This is so true, i just got dignosed with tourettes and it has been really hard to cope with life and high school with my tics (i named him Darell lol) you have helped me cope with this hard time greatly and im so greatful ❤❤❤ thank you

[@somebody-cy1yi]

I call mine Sandra around my mates 😂

[@tourettesteen222]

I named mine Jose lols

[@wickeddummy]

Thank you for all your insights and spreading awareness 😊 I can barely imagine how painful and stressful a life with Tourettes must be. You and everyone else dealing with this are amazing people and heroes in our world 😊 Take care ✌️

[@jenniferferreira9061]

I’m sure a lot of people laugh when they hear you swear. I’m sorry that you have to deal with a lot of pain, due to your ticks. I know I’ve laughed when you swear. I’ve never met anyone who has ticks. I’m learning so much from you ❤❤❤❤.

[@Mynameis_lizzy]

Yeah I do sometimes too with some of the random tics but I often feel bad about it

[@jenniferferreira9061]

@@Mynameis_lizzy same. You sometimes just can’t help but laugh. When you hear someone just swearing and saying some crazy stuff. I’ve learned so much from Zara. She’s just amazing ❤️.

[@bluebutterfly2801]

Hi Zara. I just wanted to say I think you’re such an inspiration. I don’t suffer from Tourette’s myself but I do have a seizure disorder and your videos help me every day to keep me positive and keep me working towards my goals. Since discovering your channel I have achieved my dream of teaching myself to play guitar and writing and releasing original music. Keep up the great work.

[@moss.opossum]

I was diagnosed with Tourette Syndrome last month; thankfully it's mild for me and my tics haven't been painful, although I do find them embarrassing and distressing, particularly in public. I am grateful that you spread awareness about so many aspects of living with Tourette's as well as how it interacts with your comorbid conditions, I think education about comorbidities is super important. Take care, you're amazing 💚

[@moonell]

You are such a calming person for me to watch! Thank you. For being vulnerable and honest on the internet and spreading awareness for us less brave to express what we struggle with. Your work is appreciated. Take care of yourself ❤

[@BootyyyShaker900]

I get SUCH a sore neck from constantly having neck tics! Thank you for adressing this Zara, I needed this 💗 xxxx

[@ModeratelyTerrifyingHallway]

The neck twitch really does hurt quite a lot! I already have joint pain, so it really doesn't help. I also relate to other topics you talked about and shown in this video, and it was nice to hear about other people's experiences.

[@ericmadsen7470]

Thank you for informing people of what Tourette's is and it is normal and not to be alarmed when a tic happens.

[@BigBlue-xt9ss]

I really love your channel because you inspire me and I have learned so much about Tourette’s and FND and autism and you just light up my day! As a girl that has grown up with a brother with Tourette’s, Adhd and Autism I kinda know your stuggle even though I don’t have any connection to having tics or anything like that but still your channel means so much to me the day I found your channel I felt so blessed! Thank you so much for spreading awareness for everyone! You are doing Gods work ❤️ Happy Tourette’s awareness month! 🩵💙 (sorry could not find a dark teal/blue ribbon) ❤❤❤❤

[@brandiedevoe6464]

I understand the pain you talk about from ticking, I don't have tourettes but I do have damaged nerves and muscles and that combined with medication side effects have created very painful tics and twitches, the sensation you described right before a tic attack is very accurate.

[@kellywidemire8574]

Thanks so much for this video. I have both Tourettes and FND also. I live in a group home and unfortunately, people around me aren't always understanding and sometimes I deal with people purposely triggering my tics or seizures. I am so glad I found someone who completely understands the struggle. Sending you so much love ❤️

[@reader1236]

That's horrible, Kelly, people triggering you on purpose! I'm so sorry. 😞

[@bossatronking3426]

Again my 1000000% respect for your honest and open informing us of your life challenges.

[@Gilgwathir]

I love how gently and honestly you educate. You caught me with the funny parts, I stayed to learn more. ❤

[@scottipmagician]

I've watched about 20 of your videos over the last week (some dating back 2 years). At 43 years old, I'm now more EDUCATED, TOLERANT and UNDERSTANDING towards what tourettes really is thanks to your channel. PS. I had to google what FND was. Keep raising awareness and sharing your very difficult story with us please. Scotti P Proud Ally and Subscriber

[@TheJohno95]

I am so sorry that you have to go through all of this. I would like to say thank you for sharing your stories with us. Television likes to just show Tourette's as a funny situation that lets people act out. Seeing the truth of it and seeing how much emotional and physical pain it puts you through can definitely create empathy in others. I appreciate you educating those of us who don't have this condition. Since I don't have it, I don't know what it's like. But I can understand it because of the way you walk us through it. I have definitely come to be more sensitive to people around me who have it. I hope you're feeling better and have a wonderful day. Thank you again for all you do!

[@leahd7269]

Just wanted to say that you articulated this so well. You’re an excellent educator. I’ve learned so much from you. Thank you for sharing yourself and your life with us. Your authenticity is refreshing and your positivity is inspiring. Blessings for health and happiness. 🙏

[@strawbemily3182]

thank you so much for this.. its nice to hear another person talking about the injuries and chronic pain associated with tics... its something i was always in denial about and thought my pain wasnt valid bc it was somehow self inflicted. and lots of friends and even doctors dont understand the amount of pain im constantly in.

[@hollyavillella554]

Thank you for sharing your knowledge here on YT! You are by far the most articulate and knowledgeable speaker on Tourettes I've ever heard. Surely people will be compassionate toward any affected by Tourettes after being educated by all your videos! Bless you! 🩷🙏

[@satansalley6526]

Nice to have you back.I feel im learning alot from your channel. The future us in good hands.

[@Ragdollcatlover]

Thank you for being so willing to educate people about Tourette’s and for your patience.

[@bean5432]

Thank you for talking about this! ❤

[@TheHannahRichards]

Thank you Zara Beth. I thought I understood a little, and now realise that I know nothing. I just hope you realise how much your videos are educating people like myself. ❤❤❤❤

[@mrsubtlemouth6838]

Great to see a new vid, hope your feeling better

[@raevynwoods9403]

Thanks for making this video! I had no idea that tics could hurt you, although it makes a lot of sense now I think about it. I'm happy I know now, I guess this video made me much more aware of the severity of Tourettes and I'm glad for learning it. I think it's so useful just for being compassionate towards others to be more aware of how different conditions can affect you.

[@shlubjohnson4687]

My echolalia has copied your tics so much. I have the same common tics as you, simply because you have helped me understand myself. I feel the pain but your videos help me. I'd rather understand myself and adopt tics, than never know myself. So, I thank you, no matter how many tics I adopt from you. You help me so much. Thank you. ❤❤❤❤❤

[@xxyep_stuffxx4674]

Thank you! This was really informative

[@ThingsWithEngines]

I had never quite put the two and two together that just talking about tics can trigger them! Although it can be a difficult topic, it still feels good to be learning more about myself, so thank you very much for sharing this :)

[@TherapyKitt]

Thank you for sharing your experience. Although I don’t have Tourette’s, I am autistic and can relate to what you said about emotional pain. Like you said, there is so much that people don’t see behind the scenes. Your videos have helped me realize that it is okay to slow down and take care of myself. Take good care ❤

[@nereidgreen6653]

Super informative. Wonderful presentation.

[@eneverem]

I have a tic where I grind my teeth so hard it has been known that I break my teeth and either crunch them up like sweets or just swallow them. the pain is intense to say the least and trying to get an emergency dentist appointment can sometimes take 2 weeks. so people who say tourettes dose not hurt can go do one. also I have never recieved benefits or help with my condition off anyone even tho I have asked for years. all my help has come from utube from videos like these. carry on the good work cos some people really need them.

[@-ellieille-]

4:11 True! I had to stop watching this yesterday because it was triggering more of my neck tics towards the beginning. Today my tics have been extra active anyway so watching this doesn’t make much of a difference, but it does make a difference in making me feel less alone! I’m out of school and don’t have a job yet, so I don’t feel the need to suppress my tics, but similar to when I started unmasking & stimming, it makes me feel ridiculous. On one hand, the suggestibility of tics makes me feel like I’m faking it, but on the other hand, I know that there’s nothing I can do to stop it! Videos like this make me feel so validated and help me practice self-compassion. Thank you for all that you do! 💗

[@honeyxxxx]

Aw you poor thing, I hope you will feel better and just know that everything thing will be okay, even if it’s not now, your doing so great, ❤

[@stevenford4719]

It sounds like feeling of Tourettes Tics are very similar to Twiching & involantray Movments Caused By FND . You Have Just Made Me Feel More For People with Tourettes. Because of the discomfort & Pain I Deal with Because My FND & How much What You are Describing about the sensation is so much the same for my FND & at Nerve & body level The One Thing I Must Say Is Even If It Looks or Sounds Funny To Othersers it is not . To simply have your Body Do things That You Can Feel But Have No Control Over Is Not Funny . It’s often scary & toucherious . Thank You For You’re Channel You Help Others More Than You Can Know...

[@reunitingetal1327]

FND causes functional tics, so yes they are similar as they both cause tics

[@Scarygothgirl]

I also experience involuntarily jerks and twitches from my FND. Watching this video makes me wonder if I might experience less chronic pain if I stop trying to suppress them? I don't know if they work the same way.

[@legbennett143]

I also have Tourette’s and what you are saying is so true! I have Copralalia too it is vey hard I have been stained at and laughed at and even called names. Thank you for posting Zara!

[@inatcacenco3006]

I am a mom of 8yo boy who has Tourette syndrom with violent tics, and yes, they hurt a lot. Love your content, Zara, bless your heart.

[@Rallizz3112]

Hi there I love ur vids. Ur such a great rolemodel for many pple out there. Go Zara Go❤❤❤

[@reader1236]

Thank you for sharing this.

[@Stzr_dragon948]

I have anxious tics and the most painful one for me is when my head turns really quickly because it makes my neck click but luckily for me it doesn't happen often😅usually mine are just these loud noises I make, leg shaking and quivers

[@A13x1a_]

Hi Zara! Absolutely amazing video as usual :) ever since I watched your teen fest video few years ago I’ve been dying to go and I’m finally going to this years one’s! You’ve really helped me on my TS journey thank you

[@luna_stargazers]

As someone who has Tourettes I can say this is 100% accurate. Thank you for shining a light on the fact tics hurt and how suppressing tics causes more painful tics in the long run. Thank you for showing me that I am not alone in the chronic pain and everything else in between.

[@beknight9399]

I haven't Tourettes, but I have Restless-Legs-Syndrome. I feel the urge moving my legs coming short before. If I suppress the movement, it's really unpleasant until painful. So I can a little bit understand of your bodyfeelings, I think. I don't understand how anybody can think, Tourettes is not debilitating, a disability or even "only fun". Oh, and I'm autistic and if I stimm too much, it can be painful too, sometimes. My father (henis autistic, too but officially undiagnosed) recently in his 60's developed this neck-tick along with a strange movement of his mouth. He himself didn't noticed, but it's obvious a motoric tic. I find this coincidence of autism and various other diseases very interesting. FND, EDS (I'm sure hypermobile), ADHD, Seizures, Tourettes etc.

[@Truerealism747]

I have autism heds ADHD fybromyalgia CFS symptoms seams autism heds causes si.much my son now diagnose tics OCD autism ADHD d

[@phill6859]

I occasionally have tics, i think its linked to stress. It makes me feel so lonely because people around me will judge me. So I can understand and empathise.

[@heatherf1332]

Hey Zara! I love your videos and your personality tics or not your amazing! ❤

[@cinicocomicofr]

thank you to explain properly and show people the reality of tourettes. ❤ and, as a person who has it, i feel seen and comprehend. ❤ also ngl something is relatable and felt 😂

[@darkchakra7226]

I'm 50 years old autistic with ts and chronic pain conditions. One of my most violent tics has caused me injuries, joint issues and migraines.

[@zephoraforde327]

Tysm you rlly help me learn about tourretes!!

[@dailyteen2219]

Ive never irl met a person with Tourettes but online many and yes every neurodivergence is hard in it's own way and nothing about them is great or cool or fun all the time so i like this vid

[@GingerKiwiDev]

Thanks for sharing. You're so well spoken! I wasn't aware of the pain with Torrette's but it makes complete sense. As does the interaction of it with FND. Chronic pain and constant injuries suck! Sorry for the long reply below. I think I shared because you've connected well. 💖 I have hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is one of the 13 forms of EDS which are genetic connective tissue disorders. Connective tissue is everywhere so so many things can go wacky. My mom is legally blind in her left eye and low vision in her right because of hEDS. I have had so many joint injuries I've lost count, plus at least 9 concussions (because apparently ankles need to work or you fall...) Yet, I've had similar experiences to yours with Torrette's with people thinking that hypermobility is a good thing. "Oh, cool you can do splits!" ... Yes, in high school I could stand on one leg, put my other above my head and touch the opposite ear. But I also lost functional mobility in my right arm and hand in what was supposed to be my last year of high school because my long hypermobile neck pinched a nerve. While I regained mobility, I still have chronic pain as well as tinnitus, and hearing loss. I also partially dislocate my jaw ("sublux") it multiple times a day (2x while watching your video). I'm an ambulatory wheelchair user because of a common EDS co-morbitiy dysautonomia. My autonomic nervous system doesn't work when I'm standing. Blood pressure drops, brain fog because of lack of oxygen to the brain, dizziness, hearing and vision get worse, digestion and nausea issues, and my heart rate can spike.

[@KierStarmer]

the neck pain part resonates with me so much right now... makes me feel a lot better haha

[@julie_uk_]

Thank you Zara

[@EmOrganically]

It may not be fun to discuss Zara, I know... for what its worth though this was an excellent education for someone who doesn't know someone directly in their (my) life with tourettes. I'm sorry you have to deal with this - and also I'm glad that you ARE you. Lots of love, and I hope you're feeling a bit better now (flarewise

[@Abi-Grey8]

I laughed with people who had Tourette’s but I don’t laugh at people. They said it was okay to laugh along with them.

[@abigailbaldwin1027]

I love your videos so much!!!! PLEASE PLEASE respond I love your inspirations!!!!!

[@travelwell6049]

Thank you this is interesting and really important for me to understand what others' might be going through. I work in education and if we had any students who have Tourettes then this explanation would be invaluable for us to support students to have a great University experience. 🙂 I wondered about your Gymnastics, if you might be concerned about having a tic at an inopportune moment (half way though backward walkover maybe), or whether you have sufficient control to hold back for just a few seconds until you're in a somewhat safer position.

[@wdwerker]

I can see how tics would be very dangerous if you were driving! I hope your little meow tic isn’t painful because it is kinda charming.

[@patrickcarney3949]

You are my number 1 girl for everything about you.

[@alessaxreacts9935]

I agree as vocal tics are painful when it happens back to back

[@Cloudyy_xoxo_]

34 mins agoooo I love you Zaira and I hope you are okay and doing well xxx

[@the_blue_raven2875]

I have Tourette’s and one of my most common tics is also a neck jerk. Over the past couple months it started to crack and recently when I have my neck tic it sends tingling and a numbing sensation down my arms. I wish people saw Tourette’s as more than just the tics.

[@issyx3957]

Love the cat shirt btw😻

[@deepfiix]

Unfortunately due to many people making viral videos most people think Tourette's is 'fun'. I can tell you it is not. I was diagnosed with Tourette's when I was 9 and I am 35 now. When my Tourette's first surfaced it was at a time when people didn't really know what it was, I was just strange to them. I was bullied so much in school and when I got home the bullying started again from my parents telling me to "Stop making that stupid Fvvcking noise" and I would hold my breath to not make the noise and then I started shaking my head (Tick) which lead to migraines, and my Mother would hold hold my head still in her hands because she believed I was just being stupid. I still have the head shaking...and the noises and my childhood has conditioned me in such a way that I can't get out of feeling like the 'Strange kid'. So yeah, Tourette's isn't fun, it's painful physically and emotionally. I have a lot more ticks then I mentioned and quite often I wake up with a completely new tick.

[@lifeinthelight.]

My premonitory urge is often a shiver that goes up my neck, through my head and down my arms. It is extremely uncomfortable. Especially when the shiver lingers in my head. Often my bigger and louder tics are triggered by these shivers.

[@RhapsosProductions]

I was first made aware of non-verbal tics, and their potential harm, thanks to Jess Thom when she was on Russell Howard's show. Iirc, she had padded gloves as she hit herself in the chest regularly, so definitely going to cause herself harm if something wasn't done to limit the effect

[@mjjae8122]

I have OCD, obviously not the same as tourette’s, but I feel like I understand what you were talking about with the tics not feeling satisfied if you put something in the way/try to redirect. This happens to me if I get a compulsive urge to do something and I don’t. Obviously, because OCD is a mental illness and doesn’t cause totally involuntary movements it’s not the same (I’m definitely not trying to make a 1-to-1 comparison). I am able to stop myself if it’s something harmful or whatever, but I just think that similarity is so interesting and I wonder if theres anything behind that

[@fairyqueenie7]

Thank you for doing this video Zara. I don't have Tourrettes but a tic disorder as well as other chronic illnesses. (Fibro, ddd & cfs/me + adhd)Tics can be so painful, I tic a fair bit during the day. I didn't realise until my manager told me yesterday that my tics were getting worse all last week until I had a tic attack at work on Friday (the last one at work was 6 months ago) I am still in pain now as it caused a fibro flare (which was already on it's way due to the hours I did last week) I get punchy and scratchy and a tic that throws my head back. Idk if it was partly triggered by my work friends as they love setting my tics off and between one and a customer that does it too I just got more and more ticcy until they kinda just exploded. Does that even make sense? I don't mind if people laugh at them/with me if they're funny but I've now had to get my manager to ask them to be mindful if i'm already very ticcy. I'm so sorry I wrote a rambly essay,

[@JessicaKMcIntosh]

I love your videos, but listing to someone talk about tics triggers my tics. 🤦‍♀️💜

[@Zara_Beth]

me too 🥲😅 that is one of the frustrating things about TS!

[@bean5432]

Yeah, something I realized lately is that people may not understand how physically painful and exhausting my tourettes are.

[@Zidrazia]

You mentioned that the majority of your tics are movements and noises rather than complex vocal tics. As someone with functional tics I'm curious, do you find that your complex vocal tics are more present in certain circumstances (i.e. flareup, overwhelm, anxiety/stress etc) than your baseline tics? And is there a difference in how they feel (for example do you experience the same premonitory feeling)? Of course do not feel like you need to answer at all, I'm just really interested in this stuff and I was nerding out about it with my neurologist lmao. My neurologist told me (which I am paraphrasing so any inaccuracies may be my fault) that most people with Tourette's have a very typical early presentation with mostly face/neck movements and simple noises, and that the more complex movements and vocal tics are more often functional tics. She said it was not unusual for people with an initial presentation of Tourette's to ALSO develop these more complex tics as functional tics later on in life. Personally I developed tics too late to be diagnosed with Tourette's (I was 22), so I've been diagnosed with Functional Tic Disorder. We believe it's a consequence of high stress levels and of masking my ADHD & autistic traits. I started out with neck movements, which rapidly progressed to more complex movements, noises, then words and sentences, then self injurious tics. I was really nervous about how far it would go but it seems to have stabilised. The silver lining was that I was assessed for ADHD on the NHS much faster than I would have otherwise I suppose 😅 And my ADHD medication seems to decrease my tics somewhat. Another thing for me is that I tic a lot less when I allow myself to stim! My tics getting a lot worse it's like a warning system that tells me I need to regulate

[@Zara_Beth]

i'm not a neurologist and can't advise on any diagnoses etc, but i can say that doctors seem very unsure of the lines between the tic disorders (i've heard many people with similar presentations be given completely different perspectives and diagnoses) so i'm honeslty not sure! my experience of TS is mild tics (jaw twitching, neck twitching, coughing, hiccup noises etc) from the age of about 7, and then at 14/15 i had a massive burst in tic severity during high school which led to my diagnosis and my educative content starting. then since school finished for me, tics have calmed down again but still a moderate amount and daily hope that gives you some helpful insight? 🙂

[@maaikebouwman1168]

Hey Zara, (With all respect) Thanks for sharing this video, very educational!! That part when you got a seizure, thanks for showing that. It was really interesting and educational, to see what that looks like in that situation. That it was triggered by a tic, thanks for explaining all that! Also 10:49 where you unconscious? Hope you where ok after that🥰🥰 Happy pride month😉😊❤🧡💛💚💙💜

[@bollgrodan7]

Sometimes tics make me feel like my neck is gonna break 💔

[@chlobobass]

Thank you for your educational and awareness video(s). A bit of a strange question which you may or may not be able to answer. No pressure to answer if you don’t want to and feel free to delete this comment if it is inappropriate or offensive. What are the rules/regulations/accommodations made for those with Tourette’s when travelling? For example, if someone with Tourette’s was travelling by plane and shouted the word bomb in an airport or aircraft. Surely, security can’t arrest or question you for a tic? Yet, constantly explaining your medical conditions are tiring in itself.

[@100PercentANerd]

I don't have Tourette's, but I do get somewhat frequent autism tics (I assume they're autism related), and most of them are the when neck twisty tic that you mentioned, and I thought I was making things up when I like picked up tics i saw or was told about sometimes. My tics are usually quite minor, and I've never been hurt by them, apart from just a particularly violent movement, and even then it's quite minor so, y'know.

[@reunitingetal1327]

Please take this in the nicest way possible. Your experience is real and valid, however the cause that you’ve put it up to isn’t correct. Autism doesn’t cause tics. It can cause stimming which outwardly can look like tics, but the way it works internally is completely different. If it isn’t stimming, then it could be a tic disorder, Whig is much more common to occur in people who also have autism, but the autism itself is not causing them if they are tics

[@user-cb5bz6vz1d]

I’m sorry for you tics zara

[@FantasticCalamity]

My worst motor tic is my neck tic as it has worn down my jaw joints and my neck joints to the point that crack so loud others cringe when I tic. It hurts. Sometimes if I'm not limber I'll pull a neck muscle. My neck tic is a quick / sharp shoulder to shoulder "checking my blind spots" thing so it involves my whole head and neck. Wickedly annoying.

[@sidd451]

Love you, i will keep you happy

[@NyoomMonster]

What do you do if you suspect you might be having tics and have had them your whole life, but you're not sure if you'll be taken seriously by a neurologist if the supposed tics aren't violent or vocal? I have movements that feel like how you described, that would probably look like tics to other people, and if I don't do what the urges want I feel really uncomfortable physically. Some of them also cause me pain/will cause me pain if I do the same one many times in a row. The ones I'm most suspecting are tics are in my face, and when I was a kid I used to get headaches sometimes from eyebrow twitches. I have chronic pain and some of it is due to chronic muscle tension thay I can't seem to control, as well as the fact that I'm constantly moving, even when sitting down. Rarely can I stay absolutely still and relaxed, and even then I will still have muscles in my body that are contracted for no reason. Even with a dose of ADHD medicine I'm satisfied with, and all my other medications for PTSD/anxiety, depression, migraines, and nerve pain, I almost always feel like I HAVE to be moving one or both of my feet while I'm awake. If I don't, the urge to do so becomes really distracting and uncomfortable. It's like resisting the urges is more distracting than just going along with it. I have other neurological issues, like migraines, fibromyalgia, full body neuropathic pain, panic disorder, chronically pinched nerve roots in my neck, and multiple cysts growing on my spine as well as sciatica. I've also had seizure-like episodes, but all my EEG tests have come back normal. I also have POTS or something similar (my tilt table results were a bit inconclusive, but my cardiologist advised me to just call the condition POTS because he felt it was the best explanation and way for me to get the care I needed). If anyone has advise or personal experience to share, by all means, please reply!

[@MerilonaMekob]

Please come to the UK and come to Dundee.

[@Zara_Beth]

i'm from the UK..😂 indeed very British

[@user-tg6js2cm4v]

hi! i wanted to ask tourettes community about something my neuro mentioned a couple years ago. can tic urge be something that people see intentional? i dont know how to explain but when you have this feeling of tic coming you let it but it can be seen as just a movement you intentionally make because it's not surprising and you know the tic is happening. i think I've been having tics since childhood but my doc says if i can stop them (they come later anyway tho) then it's not a tic at all. can you explain how much control you can have for tics to be valid? because i only have them like 10 times a day if it's a good day but they are still a problem and i wanna know if they're really something i should advocate for

[@banquet.disturbance]

for me i don't have inherently painful tics, and usually if they're not flaring i can repress them well (my parents don't know i have tics because i've always repressed them and i still live at home, and they would probably yell at me but that's besides the point) but if mine are flaring i have this one neck tic and it HURTS after a while 😭😭 it also starts to be like very uncomfortable to repress for me after a while

[@09hank09]

I’ve been having this neck jerk recently, of course, I don’t have a diagnose under anything relating to tics, but, I feel like I should contact a medical professional about it, because I feel like if I don’t do anything about it and get any other tics or weird jerks, maybe relating to my back or knees, I’m really going to hurt myself because of my back pain, neck pain and of course, knee pain. What do you think, should I tell someone about this?

[@KSttt-ck9wv]

A problem for me is neck pain. It’s not chronic but it happens after bad tic days because I have lots of neck tics

[@laurapaige5756]

Hi Zara, I have a question about the 'head drop seizure', if I can ask. I also have seizures and I'm wondering are you conscious during those ones? I have something that looks similar and I am conscious, but unable to respond or do anything and I never know what to call them.

[@anovemberstar]

I don't have toureytes, bit I have tics from anxiety. My neck ones were so bad during the pandemic I slipped a disc in my neck and damaged my spinal cord. Thank God, emergency surgery reversed 99% of the spinal cord damage, but it has permanent damage.

[@Truerealism747]

My son has those I have had them and my late mum I though torettes was effected by anxiety to I thought all tics were torettes.i have fybromyalgia CFS elements fnd heds autism ADHD

[@BootyyyShaker900]

This, this is what the tourettes community needed. Tourettes f*cking hurts!

[@r.t.6775]

I would never think "oh that must be a fun thing to have", or "that's a funny, non disabling disability" ..... I'm sad that others who do not have a disability or know nothing about that particular disability feel the need to say ignorant things like that rather than educating it for themselves to actually understand it.

[@legbennett143]

One thing I think is the most annoying is when people say, “ Your so lucky u just get to swear, I wish I had Tourette’s!” You don’t I have TS and copralalia.

[@noamthenerd]

AHHHH I have that exact same neck tic and it has hurt me multiple times. My neck is constantly sore and I have hit my head more than a few times because of it.

[@tinyaxes]

BRUH 3:20 I literally had a squat tic before watching thins vid that made me fall to my knees at the TOP OF THE STAIRS, bopped my knee real good :((