Monday, February 18, 2013

Why Tourette's is not the same as OCD

This is something I see blurred all the time.  With the new DSM coming out soon, I am afraid the line will be blurred even more.  The DSMV is attempting to categorize Tourette's alongside other mental health problems, including OCD.  Something that could have drastic implications for somebody like me who has a neurological disability not a mental health problem.

Tourette's is not the same as Obsessive Compulsive Disorder.  They think that they are related genetically; this is why you may see OCD in a family and have a case of TS pop up (like my family) or why you see a lot of comorbidity between OCD and TS.  But they are NOT the same thing.

I have both.  My OCD is so mild, it's really not even worth talking about.  Except for the context of this post.  I am what is called a "checker".  I check things; that the doors are locked, the stove is off, etc.  My rituals (if you can even call something so mild a ritual) take maybe 3 minutes total out of my day.  Occasionally when my anxiety spikes, my OCD spikes as well.  Then the rituals become a little more demanding, and I have to actively work to control the OCD.  I can do it if I try hard.  Sometimes it's harder than others; but I can actively choose to not engage in the rituals if I want to deal with the stress of doing so and the mental effort required to resist.

But OCD rituals are not the same as having a tic.  When I turn a doorknob to make sure it's locked, I'm not ticcing.  When I want to get up and check if the stove is off, standing up to do so is not a tic.

For some reason, one I can't quite understand, it seems that parents are much more happy attributing their child's idiosyncrasies to Tourette's instead of OCD.  A compulsion to lick things, smell things, touch things, or taste things is just that.  It's a compulsion.  It is due to obsessive compulsive behaviors.  It is not due to Tourette's.

It makes me upset to see these things.  Tourette Syndrome is not a mental health problem.  It isn't psychiatric.  It is a neurological disorder.  This is a distinction that apparently even doctors have trouble making, seeing as the new DSM plans to place Tourette Syndrome under the same heading as mental health problems - "Anxiety and Obsessive-Compulsive Disorders".

Now, don't get me wrong.  I'm in no way saying that mental health problems are in any way less "severe" of a disability than what I have.  I'm not saying there is a problem with having a mental health problem.  Just that I don't have one.

Saying Tourette Syndrome is a mental health problem is the same thing as saying Parkinson's or Huntington's are mental health problems.  Everybody knows that is not true.  Why is it so hard to accept that Tourette's is neurological in nature?  No amount of therapy is going to cure me.  There is no "end" for me; sure, they could do things to my brain that might help.  But nothing is certain.  Something is haywire in my brain that cannot be fixed; but that doesn't make it a "mental health" problem.  It makes it neurological.

And these parents who are blurring the lines between Tourette's and OCD are perpetuating the idea that Tourette's is a mental health problem.  It's frustrating as an adult with Tourette's to continually read these things.  It isn't my place to step in and say I think somebody's child has OCD or that a compulsion (like smelling/tasting) is not a tic.  There are even adults with the dual-diagnosis who write about those compulsions being tics.  Who am I to say they are wrong?  Of course, it sounds "better" to say it is a tic than to say it is due to OCD.  But just because somebody thinks it sounds better, doesn't make it true.

My personal theory, is that the reason things like Cognitive Behavioral Intervention for Tics (CBIT) and Habit Reversal Training (HRT) are popular amongst the Tourette's population is that so many of us have the dual-diagnosis.  The line is blurred for many of us between tic and compulsion.  And when that line gets blurred, things like CBIT and HRT can work. 

Let me explain with an example from my own life.

A few years ago I had a string of horrible self-injurious tics.  They were still tics, not considered compulsions, but they were tics that had "mutated," so to speak.  Initially, I had a tic where my hands would fly up.  Then once, accidentally, one of my hands hit my head.  Over time, and due to a very severe migraine and weeks of poor sleep, those tics mutated into self-injurious behaviors.  I would ball up my fists and bash myself in the head.  Over and over and over.  But, it wasn't just a tic.

There was an inherently reinforcing quality to hitting myself in the head (sounds crazy, right?).  Migraines are helped by pressure; I've even bought (and lost) compression headbands to put ice packs in because the pressure can help dull the pain of a migraine.  By walloping myself in the head, I was temporarily relieving migraine pain.  So, over time, this tic became more of a compulsion.  It was being reinforced by the relief of migraine pain, which made the tic harder and harder to suppress.

This was the one tic I have ever been able to stop through the use of CBIT.  (No, I've never paid anybody to teach me the techniques - this was a crash course by my neurologist.)  Because the tic wasn't just a tic, I was able to use CBIT to stop it.  Other tics?  CBIT doesn't make a difference.

Now, there are some CBIT techniques I use daily that I feel are helpful.  I have taught myself how to recognize when a tic is going to happen, and I can suppress for an amount of time.  I can "transfer" tics; so if I don't want to squawk, maybe I can clear my throat or chirp (both of which are less noticeable than a giant squawk).  It's not an exact science and some people with Tourette's can't do this.  Is that because they haven't figured it out yet?  Because they aren't trying hard enough?

I don't think so.  With severe Tourette's you would do anything to try and make it stop.  If it were possible for a person to suppress, I have to believe they would learn how to do it.  However, I also think that no matter what was going on in my brain, I would have figured out how to do this.  The first year or so I didn't know how to suppress; it was a gradual learning process and it was not easy to learn how to do.  During that one year (first year of college) when my tics improved for no apparent reason, I forgot how to actively suppress.  And when those tics came back the next year, it was brutal for months while I re-taught myself how to suppress the tics and control my brain.  I think that no matter what, I would have learned how to do these things, no matter how extreme my Tourette's.  I can't imagine life without these coping strategies.

There are no tests for Tourette's, just like there are no tests for OCD.  There is no blood draw or CAT scan or MRI where they can look and say definitively whether or not you have either of these diagnoses.  They are diagnoses of last resort; when nothing else is wrong with you and you fit a certain number of criteria, the doctors can diagnose you with things like this.  The difference lies in the nuances, which may not seem that important to somebody else.  But when I am applying for work accommodations with my service dog, I would really prefer the DSMV accurately reflect my diagnosis instead of muddying up the water.


  1. Hi Katherine - just found your blog. I'm 23, and have had TS/OCD since I was 8.

    I write TS/OCD intentionally, and not TS and OCD, because for me the two are so hand-in-hand that I don't know where the lines are. I may have a tic from Tourette's, but do it a certain amount of times because of OCD. I am anxious from OCD, and so I tic more as a coping mechanism. The idea of "evening up" becomes even more cloudy between the two.

    That being said, I could not agree with you more. Comorbidity does not mean they are the same. For that matter, ADD is comorbid with TS, but there doesn't seem to be the same discussion there, unless I've really missed it. I can see where the confusion comes in, but it's still frustrating to have to explain the differences, and why the two are managed and "controlled" differently.

    Really enjoying your blog. You have a lot of insightful points, and I'm excited to keep reading! :)

    1. Welcome to our little corner of the internet!

      I've found problems with confusing TS and ADD when it comes to school-aged children. When I give presentations to future teachers, I always make sure to stress that while it's possible to have both conditions, having TS doesn't mean you have ADD.

      I look ADD to somebody who doesn't know any better; I can't focus on a speaker, I can't sit still in a chair without rocking, I have audio processing difficulties, and my writing looks atrocious. But even though I may look ADD, I am obviously not.

      I'm glad you are enjoying my blog, hope you stick around! :)