6 ms·

My Life with Tourette’s Syndrome

97 points by Hooke 10y ago

juice_bus 10y ago
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.
AndrewUnmuted 10y ago
> 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.
- ticviking 10y ago
  > 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...
grimmdude 10y ago
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.
- Kenji 10y ago
  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.
- hsitz 10y ago
  >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.
  - grimmdude 10y ago
    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.
    - hsitz 10y ago
      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/askaboutenglish/2010/06/100608_aae_compulsive.shtml http://www.bbc.co.uk/worldservice/learningenglish/language/a...
    - cjcole 10y ago
      "adj. Employing or exerting compulsion; coercive." Restless leg (https://en.wikipedia.org/wiki/Restless_legs_syndrome 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.
markharris99 10y ago
Very interesting.... Karaoke Chicago 'If you leave me now': https://www.youtube.com/watch?v=BqI3xsPrtq0 https://www.youtube.com/watch?v=BqI3xsPrtq0 Chris De Burgh ' Lady in red': https://www.youtube.com/watch?v=wHfo8zwYFUo https://www.youtube.com/watch?v=wHfo8zwYFUo
nchammas 10y ago
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 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.
- meowface 10y ago
  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_syndrome#Pathophysiology https://en.wikipedia.org/wiki/Causes_and_origins_of_Tourette...
k__ 10y ago
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.
- saghm 10y ago
  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.
  - k__ 10y ago
    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.
    - k__ 10y ago
      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.
      - rcthompson 10y ago
        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.
Zelmor 10y ago
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.
- Kluny 10y ago
  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.
saghm 10y ago
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
readymade 10y ago
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.

97 points by Hooke 10y ago

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.

AndrewUnmuted 10y ago

> 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.

ticviking 10y ago
> 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...

grimmdude 10y ago

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.

Kenji 10y ago
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.
hsitz 10y ago
>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.
- grimmdude 10y ago
  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.
  - hsitz 10y ago
    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/askaboutenglish/2010/06/100608_aae_compulsive.shtml http://www.bbc.co.uk/worldservice/learningenglish/language/a...
  - cjcole 10y ago
    "adj. Employing or exerting compulsion; coercive." Restless leg (https://en.wikipedia.org/wiki/Restless_legs_syndrome 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.

markharris99 10y ago

Very interesting.... Karaoke Chicago 'If you leave me now': https://www.youtube.com/watch?v=BqI3xsPrtq0 https://www.youtube.com/watch?v=BqI3xsPrtq0 Chris De Burgh ' Lady in red': https://www.youtube.com/watch?v=wHfo8zwYFUo https://www.youtube.com/watch?v=wHfo8zwYFUo

nchammas 10y ago

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 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.

meowface 10y ago
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_syndrome#Pathophysiology https://en.wikipedia.org/wiki/Causes_and_origins_of_Tourette...

k__ 10y ago

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.

saghm 10y ago
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.
- k__ 10y ago
  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.
  - k__ 10y ago
    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.
    - rcthompson 10y ago
      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.

Zelmor 10y ago

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.

Kluny 10y ago
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.

saghm 10y ago

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

readymade 10y ago

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.