It’s TS Awareness month!
This is the month where you should not feel shy to ask me about Tourette Syndrome, whether it is me specific, TS in general, or about the comorbidities that go with it (other conditions that go hand in hand with it).
I have Tourette Syndrome.
TS is very misunderstood, even by doctors! Some have/spread very old information that is inaccurate. I hope to help break down some of that misinformation over this month.
Let us start with misinformation number 1.
“Your child will outgrow TS”
WRONG, so wrong, and damaging. This is classic misinformation that many doctors still toss around like a fat flabby blobfish.
Tourettes is a neurological condition and does NOT go away. What does happen to perpetuate this falsehood is a neat phenomenon around tics waxing and waning.
TICS… tics are uncontrollable movements or sounds that you do/make, a bit like a brain misfire. It says “Hey arm, lets randomly flail and see what happens”. Arm then flails.
Tics can be almost anything and can look intentional (like misbehavior, disrespect, brattiness etc.) Some things that can fall into this category are coprolalia (( we will go more in depth with this one in another post but essentially what movies portray for a laugh at the expense of a medical condition wherein one says things that are deemed inappropriate or offensive such as swearing for example)), hitting self or others, throwing things, etc.
Tics can change, stay the same, come and go, etc. SO for example some tics I have had since a child are: facial grimace, shutting my eyes super tight while rolling them back, sniffing, throat clearing, popping my shoulders out of socket/place, popping my hips out of place, etc. These tics have not changed in my 40+ years, at times they have been more intense or less intense, but they are always with me!
THEN I also pick up new tics, something my brain thinks is interesting, (and you can even pick up tics from other people with tics which sort of sucks!) For example: some new tics that I have noticed in the last year: are more repetitive words or sayings which change… “moof” was with me for about 6 months. I also repeat others, or myself more often right now which is irritating.
Tics are often exacerbated by stress or emotions whether they are good or bad, those changes can cause tics to go a bit nuts. Put a really delicious meal in front of me I get happy feelings and tic A LOT MORE. Put a slab of liver in front of me, I get anxious and tic A LOT MORE. So now imagine the stress of school/home life as a kid, add in HORMONES and it is the perfect volcano for tic eruptions!
As we get a bit older, we learn how to handle all that emotion, or it just eases off and the tics can appear to lesson or go away entirely.
Even if the tics appear to be gone, that does NOT mean you do not have TS anymore. You are just in a blissful state of not having noticeable tics. Some people live their entire life with tics so light they may not even notice they have them (coughing, sniffing, breathing tics, humming, whistling, etc. can all seem like normal day to day things, but in fact can be tics!) So you can see how all of this creates the perfect environment for doctors to think we outgrow it.
Believe me – there are plenty of us adults out there with TS to prove otherwise.
Feel free to ask questions etc.
A lot of my posts this month will flow into each other and back and forth because everything is interconnected. Hopefully my posts will be clear but it is a lot of information so ask if you need clarity.