Tuesday, May 14, 2024

It's That Time Again: Tourette Syndrome Awareness Month

May 15 - June 15 is recognized as Tourette Association Awareness Month. (I know, it's strange that this month of awareness starts midway through May and ends midway through June instead of just taking place throughout one complete month.) During these 31 days we aim to increase awareness about Tourette syndrome (TS) while advocating for those suffering from this disorder. 

For those of you who are new here or who may have missed the posts in which I've touched on this information, Hallie has TS. We started seeing tics around her seventh birthday, and she was officially diagnosed the summer before second grade. I wrote a little about that time in our lives here on Chasing Roots, in her eight-year-old birthday post.

TS is constantly changing, which means some hours, days, weeks, months, and even years are good...and some aren't. Hallie tries her best not to complain (when Hallie was 14 my mom told me that in the seven years since diagnosis she'd only ever heard Hallie complain ONCE), in part because she knows she's one of the "lucky" ones, but there are days when the weight of TS becomes too much.

What does it mean to be "lucky" when it comes to TS? For Hallie, it means a few different things. First, she has never had any vocal tics, which usually draw more attention than motor tics. I know that as much as she hates her motor tics, Hallie is glad she doesn't have vocal tics. Second, she has learned how to use dance as a coping mechanism - or even "treatment" - of sorts. Moving her body so intentionally quiets her tics and helps her feel in control of what her arms and legs and hips and shoulders are doing, at least for short periods of time. And third, she has wonderful friends who love and support her no matter what.

Most people don't know much about TS, and many people have an inaccurate understanding of TS. So to set the record straight, here are a few facts about TS:  

  • TS is a neurological disorder that causes tics. Tics are sudden, involuntary, repetitive movements and sounds.
  • TS does not affect intelligence.
  • TS affects around 1 in 100 children, more of whom are boys than girls.
  • The cause of TS in unknown, but it is believed to be genetic. 
  • Tics come and go, and increase and decrease in intensity.
  • TS is different for every person who has it.
  • Corprolalia (the swearing tic) is very rare - only about 20% of those with TS experience it.
  • There is no cure for TS.

For most people with TS, tics tend to increase during times of excitement, stress, or anxiety and decrease during times of calm or focus. Talking about or drawing attention to tics only makes them worse, as does asking someone to stop or suppress their tics. In fact, suppressing tics can lead to uncomfortable and even painful severe rebounds of tics along with additional issues like migraines, anxiety, and depression.

So, how can you support someone living with TS?
  • Don't stare or draw attention to tics, and don't ask your friend not to tic. Though it can be difficult at times, try to pretend the tics aren't happening.
  • Don't try to fix your friend, but do pay attention to subtle signs of distress and offer support. (Just like you would do with friends who don't have TS.)
  • Don't joke about TS, and if necessary, stand up for your friend if others are bullying, taunting, insulting, or making fun.
  • Follow your friend's lead with regard to TS and tics. Some people feel comfortable talking about it, while others do not.

Ultimately, awareness, understanding, and kindness are the greatest tools we have to help people with TS live productive, successful, and happy lives.

Speaking of...my girl is productive, successful, and happy. (Well, most of the time. She is a 15-year-old girl, so she has 15-year-old girl "moments" just like the rest of us had, have, and/or will have.) She has the tenderest of hearts and is an ally for all, likely because she herself has been treated unkindly and understands how horrible it feels to be laughed at for something she cannot control. She has fragile moments, but is otherwise made of steel - exceptionally tough and resilient. We talk regularly about how "everyone has something," meaning that everyone is fighting a battle we know nothing about. Some people, like her brother, cousins, and sweet friend, Morgan, have dealt with life-threatening food allergies. Others, including multiple friends of hers, have dealt with anxiety and OCD. Others still have conditions like dyslexia, ADHD, or autism or diseases like diabetes and cancer. For Hallie, knowing that everyone has something makes her something an easier pill to swallow and reinforces her mission to go out into the world and make everyone - regardless of their something - feel accepted and supported and loved. 

I always think of this picture as her "Tourette syndrome" picture. It was taken before we received her official diagnosis but after we had accepted what was coming, so it feels very transitional to me. Both before Tourette's and after Tourette's, when the world felt very dark but there were glimmers of her light shining through.

Questions? Ask us!

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