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.