10 reasons I LOVE Tourette’s!

Like the title says, these are 10 reasons why I love having Tourette Syndrome! Of course, there are times when I get frustrated with my tics and wish I could just stop the things that I say and do. I have come to find reasons to absolutely love my Tourette’s and be thankful that I have TS. Here is my top 10:

  1. Something more serious is not wrong and causing the things I do. I had tics as a kid, but they reared their big, ugly head once again as a teenager and adult. They were subtle at first, but got so bad that I could not stop moving and twisting and contorting. It hurt. I had no idea what was causing me to do what I was doing. I think back now and am grateful that something more serious was not the cause of the sudden, severe outburst of my Tourette’s. I am not saying that TS is not serious. It should be taken very seriously. There are things that would have been much more devastating that my imagination came up with during those times before my diagnosis, though.
  2. It has taught me some great lessons in life, such as acceptance, kindness, not to judge people for what I observe of them. Of course, these are lessons we are all taught (hopefully) throughout our lives. However, when something like being diagnosed with a chronic illness or a traumatic experience happens to you, you tend to understand and implement these lessons in your own life even more (again, hopefully). Having dealt with mental illness such as depression and anxiety in my own life and struggled with self-injury, I had very strong feelings about not judging people by what you see or hear, but when my tics kicked in and started evolving into what they are now and what they were when they first became a real problem, I noticed the judgment and stigma around me even more. People stare, make fun, and can be downright rude at times. It can really hurt. I never want to be one of those people who misjudge someone because of what I merely observe about them. You never know why someone is doing something or why they look the way they do. Get to know a person before you judge them. You may make assumptions about someone and miss out on a great opportunity to learn, make a new friend or enjoy a great new experience that will never come again.
  3. It is so freakin’ hilarious! I have never laughed harder in my life than I have at some of my tics! In fact, I even wrote a post about funny tics and hilarious moments that have happened because of a tic! Great memories have been made because of a funny tic or situation that occurred because of a funny tic. These are memories that I will have forever. They will probably be some of my fondest, even. Continue reading

Please support my “What Makes Us Tic” documentary project!

A lot of people either haven’t, or have only heard stereotyped references to it like “the swearing disorder.” Tourette Syndrome (TS) is actually a neurological disorder that is characterized by tics, which are uncontrollable movements or vocalizations.

TS is often judged and misunderstood because of the stigmas that have been created by the media and and a general lack of information about the disorder publicly. I intend to change that.

Through the power of film, What Makes Us Tic is an insightful documentary that aims to promote Tourette Syndrome awareness in a positive way, and give a fresh perspective of what living with this neurological disorder is really like.

It will also provide resources for individuals living with the disorder, as well as their parents, teachers, friends, co-workers, or anyone else who may be affected by their TS. Butultimately this film really is for anyone who wants to learn more about Tourette Syndrome!

My name is Bella Marangoni, and I am a Canadian filmmaker and a high school student. I was diagnosed with Tourette Syndrome seven years ago, and ever since my diagnosis, I have been driven to change the way that people think about Tourette Syndrome and mental health in general. Continue reading

Today is just one of those days

Today is one of those days where I worry and feel like others view me as simply a collection of my symptoms or “that girl in our class who has Tourette’s.”

Sometimes I feel proud to have Tourette’s because it makes me different and unique, and I feel proud of how I have handled the cards I have been dealt. Today, though, I don’t feel this way.

The first week of the first semester of college is always a rough time for me. I have to tell my classes and professors about my Tourette’s before they know anything else about me. Telling group after group, person after person that I have Tourette’s and explaining what it is to a bunch of people who know nothing else about me really takes its toll.

I know it’s something I have to do to make my semester easier in the long run, but during this first week I just feel like “that girl in our class who has Tourette’s.” It’s pretty rare that I feel this way, but I just don’t know how to shake this feeling …

I try to think of all my amazing friends here at college and back home who see me as so much more than my tics, who support me so much and love me for who I am. I try to think of my co-counselors and campers from Camp Twitch and Shout and how grateful I am that having Tourette’s has given me my amazing camp family, but today nothing seems to be helping.

Today is just one of those days where I feel not just a little bit different, but a lot different. Today is one of those days where I feel alone.

10 Ways to Respect Children & Adults with Tourette Syndrome: No. 6

Hey everyone! I have decided to make a blog called “10 Ways to Respect Children and Adults With Tourette’s Syndrome”.

I feel like it’s not just important to tell others what shouldn’t be said, but that it’s also very important to follow this up with things that should be said and things that are helpful and supportive. This is important so that others without Tourette’s don’t shy away from talking about it all together, but instead know ways they can acknowledge Tourette’s by being helpful, supportive and accepting without being offensive.

So counting down toward No. 1, here is No. 6:

Asking questions instead of staring.

From Jenn, the mother of two children living with Tourette’s Syndrome:

I can understand when someone glances over at my children when they tic. A quick glance to acknowledge your surroundings and be sure nothing wrong is occurring is acceptable. However, when you stare too long, it makes things worse.

Not too long ago my daughter was outside of our pediatrician’s office on the ground with full-blown tics. Two people were nearby, one leaving the office and one entering. The one leaving had a child with them. The child said hello. Sam didn’t answer, and the parent made a rude comment about how disrespectful she was for not saying hello in return.

The other parent came toward me and had a look of anger and terror, and asked me what one earth I was doing to my child. I turned to her and said she has Tourette Syndrome and was ticcing. She apologized and walked inside where shortly after she came out to see if we needed anything.

The bottom line is that I was left sad and angry. I wasn’t hurting my child, she wasn’t on display for people to watch as though in a circus nor was she rude. She was, however, in physical and we both were in emotional pain. So to sum it up: People can respect us by not bringing any attention to the fact she has TS.

Look for No. 5 tomorrow. And in case you missed the ones that came before, here’s a list:

10 Things You Shouldn’t Say to Someone who has Tourette Syndrome: No. 4

What are some things you shouldn’t say to a person when they tell you they have Tourette’s? For starters don’t say “Man! That’s so awesome! You can swear all the time and get away with it! I wish I had that!” What are other things you think people shouldn’t say?

This blog is going to start a top-10 countdown of the things you just shouldn’t say to someone who has TS. So what would you say in response to this comment from another person who you have told that you or your child had Tourette’s?

Counting down toward No. 1, here’s No. 4:

You don’t have Tourette’s! You seen so normal. I’ve never even seen you tic.

From Darby, the mother of a child living with TS:

I hear this all the time. Tourette’s is so misunderstood even by medical professionals. My response would depend on the situation. Sometimes I don’t have the time or energy to educate others and I just say, “Well, you don’t see us much and how it impacts our lives day to day and 24/7.” If I have time, I try to give them some insight and specifics. But, usually they still think I am making things up to excuse my kid’s “behavior.” They don’t get it. And inevitably they want to know why I just don’t make him stop. I recently had someone tell me I should duct tape his mouth shut. People can really be ignorant. I don’t waste anymore time on these people. We try to surround ourselves with people who are kind and understanding. The rest of them have no place in our lives. Continue reading