My Life with Tourette’s Syndrome | Hacker News Reader

My Life with Tourette’s Syndrome

nytimes.com

97 pointsHooke45 comments

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.

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 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.

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

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.

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 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.

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.

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

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.

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.

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

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

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.

I think I was 10 or 11. I was having a rough time in school. Little in regards to friends, rather a lot of mocking behaviour. My Tourette's was mild, but it got worse with stress. It almost completely disappears in nature and the garden. So around age 10-11 I decided that I would not have any of this ticks and unwanted movements of hands, head and compulsiveness. I started exercising breathing and paying attention to my limbs during what I did not really understand for what it was at the time: meditation. It brought awareness that I lacked before, something that no-one has taught me about. I overcame much of my Tourette's during those years. Some remain, but it is mostly restricted to times of stress and tiredness.

I don't really know what I'm trying to say with this post. I cried a bit during that video, understanding how worse people have it than I do. I feel for you. I wish you the best, and I wish I could just give you people a hug during the hard times.

I was able to get through a lot of my childhood tics this way - compulsive blinking, hand flapping, and a skin-folding movement of my thumb that left a open wound at the edge of my hand. Not all of them though. I've still got a bunch of large muscle movements that won't go away. Maybe I should try meditating again.

Thank you for posting this.

As a 20-something year old with Tourette's, I always like to read about older people with Tourette's Syndrome. I recently found out a coworker has Tourette's Syndrome at our office and being able to be open about it with someone else like that - even though the tics are different - has helped a lot.

Seeing someone that is older and isn't as self conscious about their tics as I am gives me more hope for the future.

I was amazed to stumble across a few case studies on YouTube of a doctor treating Tourette's by adjusting the resting position of the patient's jaw.

https://www.youtube.com/watch?v=nLkPBUBmxDo

I assume there are different types of Tourette's with different causes and different treatments, but it was really amazing to see this link to the jaw.

That's super interesting.

I have no medical background at all, but I wonder if this could be related to the dopamine hypothesis of Tourette's. [1]

Bruxism and other mandibular issues can be associated with dopamine dysfunction. Normally I wouldn't think that the jaw could actually cause the problems, but perhaps there could be some kind of feedback loop there tied to dopamine.

[1] https://en.wikipedia.org/wiki/Causes_and_origins_of_Tourette...

> A young man approached me. He said, ”I know you’re faking it because I am an actor.” And then he acted like someone acting like they have Tourette’s.

As a sufferer of Tourrette's, this makes my blood absolutely boil. I grew up among relatively supportive individuals, so I never had to experience this level of blatant, ignorant naiveté. Never did I realize that sufferers still have to deal with this unnecessary torment. You'd think that social media would expand peoples' knowledge, open mindedness, etc, but clearly we have a ways to go.

> You'd think that social media would expand peoples' knowledge, open mindedness, etc, but clearly we have a ways to go.

Ohh how I wish...

I was diagnosed with Tourette's in elementary school, but I've had tics for as long as I can remember. Similar to the author, I had a lot of negative experiences early on with people (both adults and other kids) mocking and telling me that I "did not have Tourette's". Starting around high school though, people seemed to become more open-minded about it, which I can only assume is due to people finally considering me old enough to be a credible source about my own health. I'm much younger than the author though (currently only 22), so I can only imagine how much more difficult it would have been to have to deal with ignorant people 30 years ago. I sometimes wonder what would have happened to me if I were born several decades earlier; with the combination of my Tourette's, OCD, ADHD, and anxiety, I can't imagine I would have been able to get the support and help I needed to become the self-sufficient adult I am today

I have mild Tourette's, which has thankfully gotten milder in adulthood. It was the most pronounced in grade school. Minor facial tics, the occasional head jerk, and some subvocalized echolalia that took me years to be able to notice myself doing. I'm kind of shocked it's still so misunderstood by society at large.

Very interesting....

Karaoke Chicago 'If you leave me now': https://www.youtube.com/watch?v=BqI3xsPrtq0

Chris De Burgh ' Lady in red': https://www.youtube.com/watch?v=wHfo8zwYFUo

Well, I also know people who think they have fibromyalgie. I believe in tourettes, but I can understand why people don't believe in some illness.

I suppose it might be possible to tell when someone is incorrect about a perceived medical condition if you know them well, but I can't imagine meeting someone for the first time and telling them that they don't have a medical condition that they say they have (which has happened to me countless times over the years with my Tourette's). Given that I've been diagnosed by multiple doctors, this either means that they don't trust medicine or they think that I would lie about a medical diagnosis (again, without having met me before). Maybe you can understand why some people think it's reasonable to tell compete strangers that their medical diagnosis a sham or that they're liars, but I definitely can't.

I think there are differences

IfI just met you, and you say you got a real condition, like tourette, I will probably believe you, because I think tourette is real.

But if you would tell me you had fibromyalgie, I wouldn't believe you, because I don't think it's a real condition.

This has nothing to do with how long I knew you.

Why the down-votes?

Do you also believe a person that tells you homeopathy healed them?

Just because someone believes in something doesn't make it more real.

Saying "I don't believe fibromyalgia" without any further explanation sounds like you are denying the fact that fibromyalgia sufferers are experiencing pain, that they're making it up. I would hope this isn't what you mean.

I don't believe in homeopathy because there's no scientific or medical evidence that it works. Fibromyalgia is a documented medical condition that actual doctors diagnose. I'm sorry, but I don't really see a parallel here.

(That being said, I didn't downvote you; even if I wanted to, I don't have the karma for it)

There are many doctors who prescribe homeopathy.

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