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Comment by grimmdude | Hacker News Reader

I have mild Tourette's as well, mainly in the form of body and facial tics. While I had some challenges growing up (nobody knew why I did the things I did) I can't say it was as bad as this recounting. I am a bit younger though (33). I do agree that most people just think of Tourette's as uncontrollable swearing since that's mainly how it's represented on TV. It sucks, but I'm lucky that it's relatively mild and people I know don't seem to be bothered by it. I think it's very hard for many people to understand because it's so hard to put into words. Many people think it's involuntary, but when you tell them that it's in fact voluntary, but compulsory they tend to downplay it and wonder why you just don't stop. Anyway, great article cheers.

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I was diagnosed with mild Tourette's as a child, for facial and vocal tics, and a few random incidents of sudden swearing. My mom would tell me I didn't know I was doing these things. I always protested that I was quite aware of my tics. For me, it's like an scratching itch. Hard not to scratch it, but possible with will power. But you can't go through life constantly concentrating on this battle.

I don't have Tourettes, but I am a drug addict. I can relate to what you said about it being voluntary but compulsory. Although I know no one believes that using heroin is involuntary, I know they wonder why I don't just stop. And I wonder, too.

So do > 35% of Americans who are obese. Why don't they just stop eating? That's over 100 million people.

So is it the same as an addiction? I know drinking soda is addictive. I would not say it is voluntary since the urges are not coming from me but rather my mind. The first few times it was voluntary. Not anymore. I cannot just stop cold turkey or the cravings will be quite bad. Instead I'm weaning myself off of it.

Would be interesting to hear your story. It sounds like a very good description, this "voluntary but compulsory". Would you mind to share more?

>when you tell them that it's in fact voluntary, but compulsory they tend to downplay it and wonder why you just don't stop

It sounds like you should find another way to explain things. "Voluntary" and "compulsory" are in their usual meanings contradictory, muutually exclusive, impossible for one action to be both. So it's no wonder that people get confused when you tell them it's "voluntary". I understand what you experience may be hard to put into words, but maybe you could find some way that at least avoids this confusion.

Someone described something similar as "like sneezing". You know when a sneeze is coming on, and you can delay it, but it's hard or impossible to actually stop the sneeze. Is that a good analogy?

I like to use that analogy but replace sneeze with "itch" - the more you think about it, the more you need to scratch it. (In this case "thinking about the itch" is "thinking about not ticing")

I've used this analogy as well to describe my tics to people, which I think has been fairly effective in communicating how it feels (at least, to people who are open-minded enough to learn about it)

OH man, the itch is a really good analogy. I suddenly understand what is going on with Tourette's now. I mean, even discussing this topic I felt the need to scratch.

Prior to reading that analogy I just could not wrap my head around the "something they don't want to do but not actually involuntary."

The desire to scratch an itch explains it perfectly.

The sneeze analogy is a good one. Or an itch that you're trying not to scratch.

Regarding sneezing: next time you feel your nose itching squeeze the top portion of your right ring finger real hard. I have no clue why it works but in most cases (say 90%) it works for me.

Then again I sneeze when ever I look up at a clear blue sky so it might just be my wiring. :)

You (and I) probably have the photic sneeze reflex. Maybe a third of people have it. Its cause is not perfectly understood, but maybe relates to sensory information from the nose and the eyes traveling along some of the same nerves.

https://en.wikipedia.org/wiki/Photic_sneeze_reflex

Just cover your nostrils with the side of your pointing finger. That usually stops the sneeze. My theory is that it stops the flow into your inner nose of whatever is causing you to sneeze; most likely some type of micro particles.

Breathing out through my nose works for me. Seems to quiet the sneezing "itch".

Breathing in through my nose intensifies it.

I once had a secretary who - whenever she saw I was about to sneeze - yelled: "I bet you can't do it, bet you can't do it", in a childish, daring voice. Totally worked every time.

Funny, I heard remedies for incoming sneezes from several people and it's a different method every time, I'm not exaggerating. Pressing up the tip of your nose, press against the forehead, press your tongue against the palate etc. The latter works best for me, BTW. I better not try to find a theory what's the real cause.

I just read Motherless Brooklyn and thought it did a good job of explaining the compulsion.

I don't consider "compulsory" to mean involuntary. Something like a muscle twitch or spasm is involuntary, whereas something that's compulsory just means you feel the need to do it, not necessarily involuntary though. I do understand your point though, thanks for your comment.

Yes, but if you're trying to communicate to other people, you can't focus on what you yourself consider to be the meanings; you need to focus on how other people understand the words. I suspect that your use of "compulsory" would be better understood if you used the word 'compulsive' instead. "Compulsory" generally means "required", "not optional", and I think that may be why people misunderstand your descriptions. See, e.g., http://www.bbc.co.uk/worldservice/learningenglish/language/a...

"adj. Employing or exerting compulsion; coercive."

Restless leg (https://en.wikipedia.org/wiki/Restless_legs_syndrome) runs in my family. It's not the same thing of course, but it lives in the same space of "voluntary but compelled" actions.

I understood what you were saying perfectly.

When you have tics, you often can hold them in. But it is tortuous to do so, especially for extended periods of time. So it is voluntary to tic. We do it because to not do it feels even worse than the negative attention and embarrassment we receive from doing it.

Now consider how your comment parallels many of those the article's author goes into detail about. Telling someone that they need to explain it differently transfers the responsibility of being considerate on the Tourette's sufferer.

> When you have tics, you often can hold them in. But it is tortuous to do so, especially for extended periods of time. So it is voluntary to tic. We do it because to not do it feels even worse than the negative attention and embarrassment we receive from doing it.

Wow, that sounds so incredibly familiar to the OCD that I have.

I can obviously resist compulsions, but the anxiety grows to overwhelming levels at times. Eventually it's so exhausting that I'll give in. Much easier at home (ridicule really is an effective deterrant), but in the worst years of it, I'd sometimes do them in public even with the ridicule that comes along with that.

I never had a problem with mimicry, but I've definitely had people finding a trigger in me and exploiting it for their personal amusement (like they're Pavlov), including my parents.

Thankfully, these days, I've got about 80-90% of the OCD licked. It's mostly just obsessions now. I've become extremely adept at blocking all but the most benign of compulsions.

So, a question for you ... the torture you feel in holding in the tics ... is it anxiety that you feel? Or is it a different emotion?

Thanks for the thoughtful reply. You may not be surprised to learn that TS sufferers often also suffer from OCD or other conditions within the same spectrum.

To answer your question, YES, holding my tics in generally does produce a feeling of intense anxiety. This can end up deriving similarly intense levels of anger, frustration, and sometimes even physical outbursts (punching the wall, biting my fists) if allowed to go on long enough. My triggers are almost entirely environmental or stress-related. Believe it or not, one of the best places for me to avoid tics is at the opera. I love music, particularly classical and jazz, which typically require physical discipline and quiet focus, but because I am a musician and composer, I get to a very serene place in these scenarios and therefore have very few tics. Same thing with my work - if I am in vim writing code, I can go hours without tics. But as soon as I hear someone talking about the elections, for instance, I am a completely different person.

Fascinating. Thank you for your detailed response as well!

Indeed, this interested me so much that I just spent the last hour reading up and learning about the comorbidity of TS, OCD, and ADHD. (I have the latter two.) Funny because ADHD doesn't seem related in the way TS and OCD do. I hate to admit, but I was rather ignorant and assumed TS tics were involuntary until your post.

> Same thing with my work - if I am in vim writing code, I can go hours without tics.

Interesting. For me, doing the things I love the most, like coding, are when my OCD is the most intrusive. That wasn't always the case. It was on 24/7 from around 16-22 years of age. But these days, triggers tend to only produce unwanted anger (misophonia) rather than obsessions or compulsions. I ... don't know if that's an improvement or not :/

OCD is an intensely adaptive disorder. Like playing whack-a-mole. Everything about it is constantly changing.

> This can end up deriving similarly intense levels of anger, frustration, and sometimes even physical outbursts (punching the wall, biting my fists) if allowed to go on long enough.

Hmm ... mine mostly just stays in as a non-stop obsession that can last days, weeks, months ... I eventually managed to cope a bit on my side by just telling myself, "if I obsess over this new thing, then I won't be obsessing over that last thing anymore. Either way, there'll be something to obsess over." WAY easier said than done, and I'm close to 20 years into my fight, but yeah.

I certainly get angry, depressed, humiliated, feel helpless, etc whenever I lose to this condition. Have done things in the past like punch myself in the head in frustration, angry at my brain for being so damaged. Which obviously doesn't help at all :P

...

Anyway, thanks for sharing, and for educating me more on TS. I don't mean to sound like I'm throwing out empty platitudes, but I do genuinely hope things will improve for you in the future. Anxiety is hell =(

> but I've definitely had people finding a trigger in me and exploiting it for their personal amusement (like they're Pavlov), including my parents.

That's hilarious! Any good stories?

I started calling movements like that semi-voluntary. Just like with OCD, what you're doing is totally conscious and done by voluntary muscle contractions, but you just go nuts if you don't do it and satisfy the kind of craving to do that movement.

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