‘I was moving uncontrollably, filled with fear. It happened overnight.’: Young woman vows sudden Tourette’s syndrome won’t stop her from ‘living her best life’

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“Hi, my name is Bryony (people call me Bry) and I have Tourette’s Syndrome. I received my diagnosis on July 7, 2021 but my journey with this disability started many years before that.

The first time I noticed that my body was starting to develop tics was when I was in high school, around the age 0f 12 years old. This tic was an involuntary inhale of breath, but I had passed it off as a hiccup so I didn’t seem ‘weird’ to others around me. At first, I didn’t really understand what was happening as I had no other feeling that I could relate to this tic (which pretty much just happened overnight). This tic would happen at least once a day. I was moving uncontrollably, filled with fear. It was not normal, and I was very terrifed. I didn’t know how other people were going to react; I didn’t want to be the center of attention.

little girl smiling and holding a bag
Courtesy of Bryony Munro

This carried on until lockdown began in 2020. The fear of the unknown spiraled within me, and my mental health declined very quickly. I felt so isolated from my family and my boyfriend, and it was really hard for me. I was soon referred to a psychiatrist to help with my OCD at the time. I was on medication and I had been to a few different therapies for my condition. After a good while containing a lot of breakdowns and probably more low days than high, I was able to handle this mental illness. But during this time, I had picked up a few more tics (for example, my neck twitching). Having more uncontrollable movements made me worry that I was getting worse. I wasn’t sure what exactly was happening so I decided to bring it up with my psychiatrist to see if he could explain what was happening to me in more depth.

At one of my appointments (which were all online through video calls), I had the inhale of breath tic and my neck tic, and my psychiatrist flagged to me that it seemed like a tic. We spoke about how long I had had the tics for, how often it appeared when my neck twitch started, and many more questions like that. At the end of this session, we had come to the conclusion that my tics would be considered a tic disorder and not Tourette’s at the stage. Knowing that I wasn’t just being abnormal and there wasn’t something really wrong with me was a weight off my shoulders. Knowing these movements are part of a disorder and not just my body doing strange things helped me come to terms with this diagnosis.

Months passed. I can’t remember if this was the 2nd or 3rd lockdown we were experiencing, but it was announced that on Boxing Day of 2021 we were to go back into lockdown. This for me was very scary; it was unexpected, so I believe the added stress was the trigger that made my tics start to worsen.

Over the next few months, my tics began to increase and develop into more complex forms and vocal tics. As they increased, I was so worried about if I would hurt myself, hurt someone I’m with, or even say something offensive to someone. Having these involuntary movements was a scary feeling, not knowing what you might say or do is scary for anyone no matter what age you are.

As my tics increased, I was asked by my doctors to film some of the more active episodes of tics I have so they were able to see better what was going on when I wasn’t in appointments. It was becoming more and more obvious that this wasn’t a tic disorder. That’s when the name Tourette’s syndrome first came about for me.

Of course, I did my own research, but there were still so many unanswered questions that I had and I was still so worried about what these involuntary movements/sounds might do. This is when I started to look for answers on social media, Instagram, TikTok, and YouTube. I started to reach out to creators that have disabilities and I was able to ask them questions directly. Watching these creators online, advocating for this disability, gave me a sense of relief. I was able to watch someone’s daily life, while they were experiencing the same thing I was. It was so reassuring to know I wasn’t alone.

After debating in my own head for so long, I finally decided that I too wanted to post my educational videos online. If others videos made me feel educated, inspired, and entertained, then why couldn’t I do that for someone else? I have always loved photography and videography so starting to edit and create content for platforms online seemed to come easily to me. Knowing that my content has helped someone in any way, well…I would say that’s a job well done.

Today I am continuing to post on social media. My tics are still increasing and turning into full-blown tic attacks; I am now at the point of sometimes not being able to say full sentences. After my doctors watched all of the footage and saw what it was really like for myself to be living with this on a daily basis, they officially diagnosed me with Tourette’s Syndrome.

At the time, I was coming to the end of my course in Professional Dance Performance with Lossie Entertainment Academy. Music has always been a passion of mine so studying Musical Theatre and Professional Dance just seemed fitting for me. After completing my course I stayed on for dance classes in the evening.  These classes are what helped me with my diagnosis so much. They gave me a distraction from my tics. When dancing and singing they almost melted away, I was able to be just me and enjoy the music. The classes gave me a space and the opportunity to have an outlet for my emotions and my creativity. Music in general has been my savior during this scary time.

Courtesy of Bryony Munro
Courtesy of Bryony Munro
Courtesy of Bryony Munro

After receiving my diagnosis, I became more myself. That seems strange to say, but I did. Although knowing this condition is lifelong was a hard pill to swallow, I was happy to learn that what was going on inside of me had a name: Tourette’s Syndrome. Some days are harder than others, but I just want to help and educate people on the reality of this disability and how it isn’t going to stop me and shouldn’t stop them from living their best life. After being through the whole diagnosis process of being diagnosed with Tourette’s, there are a few things I would like you to know.

People with Tourette’s don’t tic all the time, their tics can be calm or highly active. Someone can go days without ticking and others can only go a few minutes. It’s more like a spectrum rather than just tics or no tics. Another fact about Tourette’s Syndrome I found out was there is a thing such as mental tics. So along with vocal and motor, there also comes mental tics. If you see a person with Tourette’s syndrome and they aren’t visibly ticking, don’t be quick to jump to conclusions. Just because you can’t see us ticking doesn’t mean the tics aren’t there.

If you are reading this, and relating to my story, I want you to know that you aren’t alone. Never think you’re alone in this. Your journey will be unique to you but everyone in this community is there to help each other. You never have to feel alone. It doesn’t matter if you have Tourette’s Syndrome or not, you are unique in your own way. Live your life the way you want to, and always strive to be kind. You have no idea what others are going through.”

Courtesy of Bryony Munro

This story was submitted to Love What Matters by Bryony Munro. You can follow her journey on Instagram, TikTok, and YouTube. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘I had to wear adult diapers. ‘Do you realize how stupid you look?’ He was mimicking my tics in front of the class.’: Young woman with Tourette’s Syndrome finally finds help, ‘I got my quality of life back’

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