A List of Things People Will Say to you When you Have Tourette's

     I love it when people ask me questions about my disorders.  After all, Tourette's and Fibromyalgia aren't exactly common, and I know how important it is to teach people about such things--if you destroy ignorance today, it could save a life tomorrow.

     So when people work up the courage to ask about how things work or feel, I'm almost always thrilled!  I love teaching, I love learning, and I love open, fearless discussions about the realities of life, peeling back the layers of stigma and ignorance that do nothing but fester when left opaque and undiscussed.  Transparency, in this case, is a good thing.

     But there are certain things that are said to someone with Tourette's that don't fill me with the warm fuzzies, things which are best left unsaid.  While I'm glad that I was able to address some of the things that have been said to me before they reached the ears of anyone else in the same boat, I'd appreciate it if anyone reading this didn't make the same mistake--unless, of course, you put them in the mouths of your characters, in which case it might add a touch of realism to the story.

• "What's that disease you have?  Can I catch it?  Is it safe to drink this?"
   

       Tourette's is NOT a disease.  It's a Syndrome, a disorder, a disability, but it's not a disease or an illness, a virus or bacteria or infection.  It cannot be caught or contracted, and the worst you'll catch if you drink from my water bottle is probably a sore throat.  

  
  

   

• "Have you tried medication?"
  
  

       Yes, actually, I have.  But as I've mentioned in other posts, due to low visibility and nil fatality there aren't any medications designed specifically for Tourette's Syndrome; the best you'll find are seizure medications, many of which can be very cognitively suppressant and/or harmful to your heart.  Clonidine is just about the only medication that does neither, but it's used primarily to treat ADHD, and didn't help me at all.

       The problem with this question is multifaceted; firstly, it implies that neither I, nor my family, nor the myriad of doctors I've been to have ever considered looking into medication.  Unless you're a homeopath, trust me when I say that medication is the first thing you think about when you're diagnosed--sometimes before you're diagnosed!  The better question would be "Does medication work?," the answer to which would be no, most of the time it doesn't.
  
       The second problem with this question is that it implies that medication is necessary.  For something like Tourette's, medication can sometimes help manage tics, yes, and if you have very severe tics or a particularly misunderstanding set of peers it can put you in a much greater sense of comfort.  But because it isn't deadly, there isn't a driving need to use it if you don't want it, and most people who ask this don't really care about the comfort of the afflicted individual--they care more for their own comfort and sense of worldly normalcy.
  
• "Can't they put you in a coma?"

       People have said this to me.  Please, take a second to think about this; human beings have approached me, called me by name, and very openly and genuinely asked me if (or told me that) a medically-induced coma could be a solution.  I honestly don't know where this comes from--what would that solve?  What would it change?  I think it just links back to the prioritizing of one's own comfort above the comfort of the afflicted individual, but to a new kind of extreme--imagine if you started coughing and someone came up and told you that your cough was so annoying that you needed to be locked in a closet for an indefinite period of time.  Yeah.  Not a great feeling.  

• "I wish I had Tourette's!"

      No.  No you don't.  You really, really don't.  You don't want the stares you'll get in public, or the ableist comments from your peers, the cruel nicknames people think are funny, or the way half the population doesn't even believe that what you have is real.  You don't want the loss of bodily autonomy or the mental illnesses that usually come hand-in-hand, and you absolutely do not want to be yelled at by police officers in the driving rain, or teachers who tell you you're lying when you try to explain yourself, or substitutes that were never told about your condition.

       You just really don't want this, so don't act like you do.  I know you mean well, but you clearly have not thought this through.

• "If I had Tourette's I'd swear all the time!"
  
       Well yes, maybe you would.  Or maybe you wouldn't have coprolalia at all, like ninety percent of people with Tourette's Syndrome.
  
       I'm also often asked if I ever swear on purpose and use my Tourette's as an excuse, and the answer is always no.  Yes, I swear, and yeah, having coprolalia has made me pretty callous about it--if I'd continued to care about it after it started I'd be in a pretty bad place, so the best thing for my own mental health was to embrace the practice and take a little control back.
  
       But never once have I used my Tourette's to excuse my own words.  When you have Tourette's, there's a separation that happens in your mind.  You delineate between "Me" and "It;"  Me and It are always battling for control over mouth and body, and you feel the need to protect the Me, to take credit where credit is due.  You learn not to feel pride or shame for what It does, and instead focus your energies on how Me functions.
  
       I cannot control it when It swears at my teachers, but I CAN control it when Me swears at teachers, so Me keeps its mouth shut where applicable; I've had tics that keep me from talking and tics that keep me talking, so when dealing with Tourette's silence is as much a weapon as speech.
  
• "You're just faking."
  
       Also, see; "Tourette's is fake" and "Stop it anyway" and "No you don't" for varying degrees of ableism.
  
       This is one of the worst things you can say to someone with Tourette's--or any disorder, disability, or illness, really. With Tourette's it often connects to the comments above--people are only faking so they can swear, after all, never mind that tons of children are injured by or beat up for tics every day that have nothing to do with cursing.  Tourette's is hell enough without the disbelief that accompanies it.
  
       I've also been told stories about kids that were faking it, like it hurts my case to have someone else screw up--not that I know they screwed up in the first place.  The story I best remember is one in which my sister-in-law's stepfather walked in on some of his students talking about how "awesome" it was they got to swear in class, at which point he told them that if they ever swore in his class again they'd see their comeuppance.
  
       My question, of course, is how does he know they weren't just trying to make the best of a bad situation?  That's kind of the status quo of the disabled.  "Look at this awful thing I have to deal with!" we say, and everyone says "Shut the fuck up you whining loser!"  "Well I guess at least I don't have to do gym anymore," we mumble, curling up into a ball.

• "You don't know what it's like to lose control of your life!"
  
  
       Of all the things that people have said to me over the years, I think this one is probably the one that pissed me off the most.  A girl I had known for years turned to me in the lunch line and said this to my face.  
  
       No, I don't know what it's like to lose control of your life.  I mean, I can't control what my arms and legs do, I never know what my mouth is going to do next, my emotions might as well be tied to the movements of the Earth around the sun and the moon around the Earth, I had to give up almost half my personality in response to and in order to cope with my disorders, and for two years I had to give up my personal passions because it was too exhausting to try to juggle Tourette's, Fibro, and plays, but yeah, no, I have no idea what it's like to lose control over my life.  None whatsoever.
  
       Never fucking say this to anyone with a disorder.  Never.  
  
  
  
  
       So there's a list of a few things people might say to you when you have Tourette's.  If any of my fellow Tiquers have anything they'd like to add or share, or if anyone has any questions, feel free to comment!   I'd love to hear your stories and answer your questions.
  
       If there's anything you've thought about saying to someone you know or any questions you've thought about asking, and you aren't 100% certain that it's appropriate to ask them, don't be afraid to send me a message instead, especially if the two of you aren't that close, and I'll try to be gentle with you no matter the outcome.  I'm not trying to dissuade you from sating your curiosity, but I am trying to protect other Tiquers from the damages of thoughtlessness and ignorance.  

How To Write Tourette's, Part Two: Character Basics

     Characters with Tourette's Syndrome are uncommon, but as our understanding of the disorder increases and awareness spreads, we're finding that it's more commonplace in real life than previously thought.  As I mentioned in this post, there the numbers were once as low as one in every thousand children, some think that the statistics might actually be one in every hundred.  As the prevalence rises irl, why shouldn't it rise in the media?

     So let's talk shop.

     How do you design a character with Tourette's?  Start with a character without Tourette's.  The disorder has a typical onset of age 7-12, but the full range extends further, and there is no "typical" case of Tourette's.  Regardless of the age, your character existed before the Tourette's, even if only in an infantile stage.  They had likes, dislikes, interests, hobbies, skills, a personality--before the Tourette's, your character was a whole person.

     Take a minute to think about how old your character was when their tics started, and what they were like before the onset.  Make a list of the things they enjoyed, the things they hated, and what they felt--their relationships, their background, their passions and opinions and lifestyle.

     Miribeth Cumberbatch, a girl in my current WIP, is an athletic teenager with a passion for body-building.  She loves to read and does fairly well in school.  She's always had trouble making meaningful connections with kids her age and tends to spend a lot of time with her mothers.  Until moving to Niloh, Miribeth never really questioned the state of the world--like many teens, she took things as they were and dealt with what problems she needed to on a day-to-day basis.  She has very few strong opinions and always tries to find the path of least resistance and lessened conflict when she can; her muscles are just for show.  Her family is poor, so she likes to do for others (in a non-monetary fashion) and she feels particularly protective of her mothers, feeling that they work hard enough to provide her with what they can.  Thus, when she senses that something would inhibit plans they're excited about or limit the options available to them, Miribeth tends to omit, stretch the truth, or outright lie.
     And she also has Tourette's.

     Reading that passage isn't terribly important, so don't feel bad if you tl;dr-ed it; the important part lies in the fact that there's a lot of shit up there, and her disorder takes up the line at the end.  Am I saying it's not a part of who she is?  FUCK no!  It colors every part of who she is, but people have a tendency to start with a disorder (or a phobia/sexuality/etc. etc.) and do the rest later, which often ends in disaster.  Maybe you already have a firm handle on CREATING the characters and you just need help doing the actual nitty-gritty shit, in which case just skip down a bit, no one told you you had to read the whole article.  But please don't just ASSUME you're one of those people, either.  If you have trouble writing/have never written a character with something "different" about them before, at least try it this way once.

     "Okay Maggie, I have my character.  Now what?"  Now you start to "filter in" the disorder.  How old was your character when they began experiencing tics?  What about when they were diagnosed?  The younger your character is when they start experiencing tics, the more used to them they're likely to become--but the less accepting their classmates are likely to be.  Depending on the child and the parents, it can also be much harder for the parents to understand that what's happening to their child isn't voluntary; young children aren't as capable of explaining to their parents that they're not in control of what their body is doing, and since many young children will lie about anything they think they can get away with, it can be hard for parents to believe it even if the child manages to express the sentiment coherently.

     When children begin onset at older ages, however, it can be seen as a purposeful attempt at being contrary, particularly if the children have contrary personalities.  Some parents don't believe in Tourette's, or will never be able to admit that something is happening to their child, but I'll touch on parental impacts later.

     The larger the gap between onset and diagnosis, the more emotional damage the child is likely to suffer at the hands of the disorder and those around them.  Without a diagnosis the child might be scared (or even terrified!), uncertain, and try to repress their tics, which rarely works and is extremely painful to do.  The child may be afraid that other people might notice, and when people do notice they're not likely to immediately react with understanding--most people don't know anything about Tourette's.

     In the time between my onset and diagnosis, I remember being terrified every time I went to play practice, afraid that someone would notice the way my neck twitched and that I'd be thrown out of the play and never allowed to act again.  I was afraid that the people I considered stage friends would think I was a freak and never talk to me again, or worse, ridicule me for something I had no control over.  I still remember crying in the bathroom of the church basement one day during a water break because we were trying to dance and I couldn't keep my head still, and I was one hundred percent convinced that I'd be found out.

     If your story involves your character at a young age, these may be experiences you'll want to touch on, but you'll want to consider them even if the character is older.  The things that other children (and parents!) do and say when you're in such a fragile state can be more adhesive than hot glue, and they can affect the future behaviors and decisions of your characters.  For instance, Miribeth's onset was at the age of seven, and her diagnosis at the age of nine.  Her tics were mostly mild, but her teachers were convinced that she was a defiant little shit, so her classmates teased her and made fun of the noises and the faces she made.  This is part of the reason that Miribeth has trouble forming deep bonds with kids her age--she can't forget that some of her classmates would call her the Grinch or ask her where her owner was when she barked, and teachers make her nervous because she had too many of them say the wrong things and ask the wrong questions.

     After diagnosis, things are different depending on the school, the parents, the teachers, the student--just as in all things, the variables make a difference.  I've also found that emotions concerning Tourette's are often in flux; the child may come to terms with their affliction following diagnosis, but they'll have days when all they can do is cry, days when they want to hit people and scream at the world, days when all they want is to be left alone or else held close--it can be an isolating experience, and it can make a child feel like a monster, or like they're broken.  Children can learn to accept their disorder and to love themselves, Tourette's and all, but it is an uphill climb, and even once it evens out, the occasion rainstorm can send you sliding right back down to your last campground, especially if the terrain (ie, the variables mentioned earlier) is unforgiving.

     In the next post on the subject I'll either dive deeper into Tourette's personal impact, or talk about parent, teacher, and comrade feelings and reactions.  I'm probably forgetting things and therefore may need to revisit this later, but the best way to figure out the personal impact of Tourette's in any given situation is to consider your character's personality and/or ask someone who has it--my inbox (or the comments section!) is always open if you have any questions, and if you have friends with Tourette's they may be quite pleased to share their experiences.  If anyone has anything they'd like to add, let me know!  The comments section is always open!

How To Write Tourette's Part One: Neurology

Neurology:

     Tourette's is a neurological disorder in which one experiences both motor and verbal tics.  There are a myriad of tic disorders, but the defining aspect of Tourette's is the presence of at least one motor and one vocal tic each.  These are caused, it's believed, by malfunctions in the dopamine system, dopamine being a neurotransmitter.  What happens, essentially, is that excess dopamine rushes through the system at uneven intervals, causing parts of the body to move on their own, and on occasion a scarcity of dopamine can cause body parts to become stiff and immobile.  This dis-regulation is the heart of the disorder.

     Cases vary greatly in severity.  Tics can be as small as a grimace and a cough, or as wild as full-body thrashing and ear-splitting screams.  Sometimes tics can be immobilizing, or they can look like seizures or seem purposeful, though they are most certainly not.  I'll provide a thorough list of tics at a later date for your perusal (though to call any list of tics "complete" would be utter hokum), but for now keep these generalities in mind.

     Interestingly enough, the nervous system is not all that's affected by Tourette's Syndrome.  In the brain, we have four motor cortices, and in a typical human being, only two are active at a time.  However, in an individual with Tourette's all four cortices are active at once, which can make it more difficult to multi-task, but can also cause the individual to feel a need to multitask; in my case, I need to always have something to do with my hands.  If I don't have anything to do with my hands, I end up ticking more frequently, and I'll wind up chewing my nails and fingers.

     The four cortices being active at once mean that the individual is trying to both watch and do, listen and speak.  Overactive mirror neurons in the supplementary motor cortex are believed to be partially to blame for some tics, echolalic and echopraxic tics in particular, and are likely the reason that it can be so easy to set someone off.

Research and Statistics:

     Now you may have noticed that I've been speaking in uncertainties.  The reason for this is simple:  there aren't many certainties.  Tourette's being a relatively rare disorder, which isn't deadly or, in and of itself, harmful, it's pretty low on the radar of the public.  There isn't much research being done, and what is being done isn't getting big-money funding or huge pushes from a large and concerned populous.  "Tourette's" isn't in the common vocabulary as anything other than a joke; most people don't believe it's real, even if they've heard of it at all, and most kids who have it don't realize that they do.

     The statistics are about one in every three-to-eight hundred children, but as our understanding of the disorder becomes more prevalent and parents become a little more understanding of the honesty of their children, we find that the disorder may be more common still--perhaps as many as one in every hundred children afflicted, the ration male: female being 3:1.  Most children have only small tics--coughs, trills, finger-snapping, grimaces, blinks, etc.--which can be seen as nothing more than annoying habits by adults and lead to the absence of diagnosis.

     Children typically begin to show signs of tics between the ages of seven and twelve, but I've heard of children showing their first signs as young as two and as old as thirteen.  A childhood disorder, the onset cannot begin in adulthood, as that would be an entirely different type of tic disorder.  It's commonly said that tics start to decline around the age of eighteen and may disappear altogether in adulthood, likely due to the adult's ability to control their own environment, craft their own schedule, and better regulate their moods.  However, Tourette's does not stop when you get older; even if symptoms decrease, in times of stress tics are likely to return, no matter how infrequent, and the more research I do, the less true the myth of "never after eighteen" seems to be.

Diagnosis:

     Diagnosis is a very simple process.  Once my tics became more violent and noticeable, we went to our family doctor.  He knew nothing about Tourette's, but tested my blood, found nothing, gave us a tentative diagnosis and sent us to a neurologist.  Our neurologist interviewed me, performed a series of tests to check for a brain tumor, and handed me a slip to give to the school nurse.  It's a simple process because, like I said, there hasn't been too much research done.

Medications and Co-Morbid Disorders:

     Now when the family doctor first saw me, he prescribed fifty mg Clonidine twice a day, which did nothing and may have worsened the symptoms.  When I saw the neurologist, he upped the dosage and told me that if after a certain amount of time it continued to be ineffective, I should wean myself off the meds.   That's what I wound up doing, and come to find out, Clonidine is a drug used to treat ADHD and high blood pressure, which doesn't actually surprise me.  Due to history of heart problems and a desire to keep my mental functions intact, we chose not to medicate further and simply deal with the severe case I was dealt.

     The truth is, there are no medications for Tourette's Syndrome, due again to rarity and poor amounts of research.  There are seizure medications, which can either help to plug up parts of the brain that might cause tics, or can do absolutely nothing for the syndrome.  The drugs can be very harmful to the heart and can cause your mind to become foggy and dull; to some people, it's worth it, but personally I couldn't stand feeling like I was running at only sixty percent just to keep myself from spasming.  Tourette's can have my body, but it sure as fuck can't have my mind.

     Since you can't treat the Tourette's itself (not effectively, at least), what most people do is treat the co-morbid disorders.  Very rarely does Tourette's occur all on its lonesome--probably due to the neurological nature of the disorder, most people have something co-morbid, usually OCD or ADHD, but it can also be anxiety disorders, poor impulse control, neurological disorders, mood disorders, behavioral disorders, developmental disorders, etc..  Recently, DD officials have been opening their eyes to the possibility of certain "behaviors" in their populations being not "behaviors" at all, but tics.  Often we find that if you treat the co-morbid disorder, the tics decrease, largely because stress is a huge source and instigator of tics.  The less stress a child feels, the less apt they are to tic, and the more likely their tics are to be harmless.

Pet Peeve:  People who call it Tourette or Tourettes Syndrome.  It's called Tourette's Syndrome because it's named for  Georges Albert Édouard Brutus Gilles de la Tourette, a French physician and neurologist who documented nine cases in his lifetime.

     Part Two will be about the more personal aspects of Tourette's Syndrome, so be on the lookout!  If anyone out there has anything to add about the neurology of Tourette's, feel free to comment!