things most people don't know about tourette syndrome: an updated thread

(contains descriptions of tic self injury. image credit: http://Tourette.org . image description in alt text)

#TourettesLiving #Tourettes #TouretteSyndrome

1. that many of us with tourette syndrome also have #OCD & are otherwise neurologically divergent. some co-occurring conditions include ADHD & autism, for example. see image in last tweet for more information.

2. that the full name for tourette's is 'Gille's de la Tourette Syndrome,' named after an intern who described the traits of tourette's in the late 19th century.

3. just how fricking exhausting it can be to let the tics out OR attempt to suppress them - it's energy sapping both physically & mentally. while we are here: it is exceptionally hard to suppress (some ppl cannot) & this should never be expected of anyone.

[tic self injury]
4. how physically dangerous our tics can be - know one person who gouges their eyes as a tic. i stab myself, hit myself, fall downstairs as tics. people can also kick out & hit others as tics, completely involuntarily.

5. how unhelpful it is when people try to suggest tics to us because they think it's funny/interesting - we are not your science projects. & crucially, this can cause distress &/or injury.

6. how only about 10% of people w/ tourette syndrome have coprolalia (obscene utterances) & probs even less copropraxia (obscene gestures). tics are more likely to be simple tics like blinking, clapping, coughing, whistling etc.

7. how little yelling at us to shut up because you think we're disrupting your train ride is going to work - distress often makes tics more intense because it increases our anxiety.

8. that some of us want to medicate/have surgery/ access therapies in order to control their tics & other symptoms (e.g. did you know explosive rage is often a symptom of tourette's?) & others don't, & all choices are fine & valid.

9. that some won't experience our TS as a disability & some will. often tics are mild enough to cause no impairment, & fade out in adulthood. fwiw, i consider my TS a disability because it causes significant impairment in my adult life & society disables me regarding it.

10. that while phonic & motor tics are visible/audible to others, we can also have mental tics - repeated thoughts, images etc. i've found that mental tics are unmentioned in the clinical world, but it is an often anecdotally noted symptom & i experience it myself.

11. that some of us are incredibly disabled both by our tourette's and society's set up. that some of us need adapted homes, mobility aids (including wheelchairs and powerchairs) all because of the impact of our tourette's on our day to day life.

12. that some of us experience tic storms/ tic attacks that are visually very similar to seizures. these are intensely frequent tics that come together so fast that our brains can't process the information. they can last hours or minutes and can be scary and injurious.

13. that society's expectations about polite speech can put us in danger. i cannot count the times i've spoken to touretters who are scared of run ins with the police or angry members of the public who don't understand that touretters have no control over their tics.

14. that being around other ticcers can be the most homely experience in the world, BUT (for reasons unknown) it increases the intensity of most touretters' tics. a group of touretters tend to experience lots of echolalia & what i can only describe as 'call & response' tics!