#actuallytourette

Food dye sensitivity isn’t necessarily just “If your kid  eats blue food dye they’ll be a little too hyper”. It’s more like “If I eat blue, orange, red, green or yellow food dye I will become extremely depressed, have anxiety and panic attacks, have outbursts of intense rage where i will be a danger to myself or others and I will have worsened symptoms of a pre-existing neurological or psychiatric condition until it becomes unbearable and it can last for days”

Food dye sensitivity is most common in individuals with Tourette’s, Autism, ADHD, and certain mental health problems. Some of the most commonly reported food dye triggers are... Annatto, Allura red, sunset yellow, copper complexes of chlorophyllins, beetroot red, tartrazine, brilliant blue, and many more. Many people with certain neurological and neurodevelopmental conditions will find that cutting out certain food dyes (Even natural ones) can greatly improve their symptoms but it’s not a cure.

- Stand up for yourself when someone discriminates against you for your Tourette’s.

- Don’t listen to ignorant people who don’t understand,  you know what it’s like to live with your condition, they don’t.

- It will get easier over time

- If a doctor doesn’t believe you have Tourette’s  - get rid of them.

- If you are in school, college or university, get accommodations and support. You can get extra time on your exams, a separate room for exams, reduced timetable, a laptop to write on and more.

- If you believe you have a co- occurring condition such as OCD, ADHD, Anxiety, depression, Autism, dyslexia or anything else, get assessed if you can afford it, but you can self diagnose if needed.

- If you have difficulty finding work or if you need extra support, look into disability living allowance, PIP, or disabled students allowance (UK) or the benefits that you have in your country.

- You will probably experience self -doubt , there may be a little voice in your head telling you that your “faking it”, but you are not, many people with Tourette’s have this and if you are questioning whether you are faking it I can guarantee you are not.

- If you can, join a local support group, the friends and support you get are priceless.

- Read up on tic triggers on the ACN latitudes website , triggers can include certain foods, chemicals, emotions, sensory input, or medicines 

- Talk with your doctor about any possible treatment options because everyone is different and you can find what works for you, whether its medication, CBIT or habit reversal training. You don’t have to treat your Tourette’s if you don’t want to.

-Embrace your Tourette’s , don’t be ashamed of it!

- Don’t let anyone make you feel like you have to suppress your tics. Suppression is not the answer.

- Join an online Tourette’s forum or support group, they have all the best information and they are an amazing way to get support.

May 15th to June 15th is Tourette Syndrome Awareness month. (At least it is in the U.S. I can’t remember if it is the same or different in other countries.)

So in the U.S. it is the first day of Tourette Syndrome Awareness month. I’m excited.

For those who don’t know, Tourette Syndrome is a neurodevelopmental disorder that causes tics. These tic are uncontrollable movement and sounds. Tics cannot be stopped or controlled.

To be diagnosed with tourette you need at least two motor tics (movement tics), at least one vocal tic, and to have them for at least a year before you turn 18.

Boys are more likely to have Tourette then girls. Tourette is also hereditary. You are born with it.

I have tourette and while it isn’t fun, I wouldn’t trade it for the world. It’s a part of who I am now.

I made a post a while ago but then deleted it because I had anxiety over it. (Not that it was bad or anything, just because I’m an anxious mess.)

Anyway, I figured today would be a great day to repost. I have a new word to introduce to the community. Tourific.

My friend came up with the word to describe people who have tourette. It's an adjective/noun. I was getting annoyed because whenever I was writing something for Tourette I would sometimes have to completely reword my sentence because "people with tourette" or "this is a thing people with tourette do" did not fit properly. Also, I had some long run on sentences due to the previous wording. But now, with tourific, I can say "This is a tourific thing" or "tourifics"/"tourific people" or “I’m tourific” (The author in me loves this for writing nicely. The student in me loves this for saving on word count on an essay.)

Also, it sounds like "terrific" which is a self confidence boost.

They’re finally here! The poll has gotten exactly 100 responses after about 3 weeks after posting. Thank you to all who participated!

Click here to see detailed graphs of the results. Otherwise, the results will be listed in order they were on the poll.

Question one- What do you prefer?

59% say person first language

21% say tourettic

6% say touretter

6% say extra-tourette-strial

8% say person first language, other

Question two- Do you have any other conditions/comorbidities?

7% say no

14% have a physical disability

25% have a chronic illness

46% have ADHD

35% have autism

76% have a mental illness

26% have a condition/comorbidity that is not listed

Question three- Do you have any specific types of tics?

24% say no

27% have coprolalia

22% have copropraxia (innapropriate hand gestures)

45% have echolalia

23% have echopraxia

38% have palilalia (repeating your own words)

17% have klazomania (screaming/yelling tics)

35% say yes, but it’s not listed

Question four- Have you ever met someone else with tourettes?

50% say no

22% say yes, multiple

28% say yes, one

Question five- How do you like the representation of tourettes in the media?

29% say it’s terrible

31% say it’s pretty bad

7% say it’s bad

4% say it’s not that bad

1% says it’s pretty good

0% say it’s great

6% have no opinion

22% have never seen tourettes represented in the media

Question six- Do you use medication?

55% say no, never

19% say I’ve tried, but it doesn’t work

26% say yes

Question seven- if you had the chance not to have tourettes, would you take it?

47% say they’re not sure

33% say yes

People think Tourette syndrome is just annoying uncontrollable movements and sounds, but really its having Tourettic OCD so severe that you cannot dress yourself or use the toilet. Its having sensory issues that make every texture or loud noise feel like nails on a chalkboard, so much that you can’t brush your teeth and just wearing jeans and a jumper can make you feel sick. It’s ticcing so severely that you can’t do the buttons of your shirt up and can’t use a laptop without smashing it. It’s not being able to use a computer because your OCD makes you scroll up and down 300 times on every webpage before you can click on anything. It is separation anxiety so severe that you cannot sleep in a room on your own and going to school makes your heart race. It’s OCD rituals that take hours and make you late to school and appointments. It’s doctors not believing you and saying that all your symptoms are caused by Autism and blaming you and your parents for your difficulties. It’s your hand seizing up when you write. It’s not being able to write because you are ticcing so much. Its teachers telling you o put more effort into your work , even though your tics are making you repeatedly bang your head on the desk. It’s being sent out of class for somethings that’s completely out of your control. It’s anxiety and panic attacks that make you feel feeble. It’s lying on the floor screaming at 3AM because you just want it to end. It’s mothers who mourn for the child they’ve lost because their child is not the same.  Its facing discrimination in public and people making nasty comments. It’s being bullied wherever you go in public. It’s dissociating due to the stress of it all. It’s side effects of medication. It’s rage attacks that make you burst with anger and can make you a danger to yourself or others. It’s constantly being distracted in class because you can’t concentrate and your grades plummet. Its feeling the immense pressure in your chest and throat from suppressing vocal tics . Its self doubt and that little voice in your head telling you that you’re “Faking it”. It’s having v*miting tics that keep you home from school and having bladder tics that force you to wear adult diapers. It’s having tic attacks that are tiring and painful and make you overheat. It’s having stomach tensing tics that cause extreme pain. Its having Phantom tics where you can feel the premonitory urge on objects and other people. It’s terrifying mental tics and intrusive thoughts that make you want to scream.

I am so lucky to go to a school that is so supportive of me and they provide me with the acedemic adjustments I need to suceed . It’s really sad that not everyone gets support like this but I’m going to talk about what support I get in school.

My diagnosis are Severe Tourette syndrome, autistic spectrum disorder and OCD.

In school I get half days on Mondays, Tuesdays and Wednesdays. I leave at 1:20PM

I get privately tutored in maths class

I get extra time on my exams

I have tests and exams in separate rooms

I have a card that allows me to leave class when I need to.

I don’t go to assembly

I can skip the lunch que to avoid getting overwhelmed.

I use a laptop to write rather than using pen and paper

I have permission to go into the SENCOs office whenever I need to