What It’s Like To Live With Tourettes

tourettes1mainThe diagnostic criteria for Tourette Disorder is so simple, so clear, so straightforward:

For a person to be diagnosed with TS, he or she must:

  • have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
  • have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
  • have tics that begin before he or she is 18 years of age.
  • have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).

So simple, so clear, so straightforward.  So why is understanding the person with Tourette so complicated, so challenging, so confusing?  In large part because although it is easy to explain what it “is” it is exceptionally difficult to explain what it feels like to live with it.  Without that understanding, though, it would be incredibly difficult, if not impossible, for teachers and parents to effectively support children with TS.  And this is why…

When you look at someone with TS, all you see or hear, are the tics.  You don’t see the constant struggle, the constant commotion that is going on inside the person’s body.  Although it might be easy to assume that when a person is not ticcing, they are okay or calm or not experiencing anything related to TS, more often than not, that assumption would be entirely incorrect.

What causes Tourette tics?

Although once thought to be an “involuntary disorder”, there is a fair amount of peer-reviewed research that indicates people with TS have “triggers”, both internal and external. However, the triggers are ever-changing and inconsistent over time and even moment to moment. The initial documentation of a TS tic “trigger” was made by Joseph Bliss in 1980 (footnote) in the first-ever layman’s article published in the Archives of General Psychiatry.  His article describes how very slowly, over the years, he came to be aware of the faint signals that preceded a movement.  He described the sudden leap from impulse to movement as ”the moments before a sneeze explodes … almost as uncontrollable as a twitching nerve,” and concluded that the movements are actually voluntary: ”the intention is to relieve a sensation, as surely as the movement to scratch an itch is to relieve the itch.” Although a controversial concept in its time, it is now believed that in fact, most people with TS have “premonitory urges” in which they feel a sensation and then respond to it with a tic, which eliminates the sensation, but only for a fleeting moment when the urge begins again.

What are examples of triggers?

What are some of these triggers?  In addition to constantly changing, they vary person to person. Externally, they can be noises (loud noises but also softer noises like breathing and chewing), crowded places, certain people, unanticipated events, feeling as if someone is staring or talking about them, very cold weather, very hot weather, being physically over-stimulated, being physically under-stimulated, sitting for long (or even short) periods of time, being touched, certain foods, clothing, and smells, and so much more.  Internally, it can be hunger, over-eating, being tired, not having a specific task on which to focus energy, illness, injury and over-sensitivity to internal sensory input, to name just a few.  Although knowing what triggers a child’s tics can be helpful, for some children it is nearly impossible to figure out what they are, and some cannot be controlled regardless.  Therefore, as a start, it is essential for parents and teachers to gain a solid understanding of what Tourette feels like to the person living with it:  Joe Bliss’ concept of the Premonitory Urge.

What are Premonitory Urges?

Before a tic occurs, most people with TS feel a build-up of tension at a specific site within their bodies. Multiple “tension sites” can occur simultaneously.  This “tension” has been described in multiple ways such as an itch, a tickle, a punch, a storm, fullness, an ache, tingling, burning, and a feeling that something is not “just right.”  Once that feeling hits, the need to tic is extremely strong, analogous to holding in a sneeze or how it would feel if someone held their eyes wide and were told not to blink.  Although some people can control tics for periods of time, most people feel that if they don’t tic when they get the urge, that they will “burst” or get that feeling like they want to jump out of their skin. Even when tics are suppressed, eventually they need to be let out, creating a “tic storm” that can be painful, embarrassing, and create missed learning and/or social opportunities.

What is an example of a child with Tourette Syndrome?

So, let’s think about this in the context of a school setting.  Young Danny, aged 10, has Tourette. He was diagnosed at 5 and currently has no other diagnoses. However, over this past year, his parents are concerned about symptoms that look like anxiety and depression. They have also noticed that he is much more irritable when he gets home, than he has been in the past. He is a bright boy, with no learning disabilities but is not doing well in school.

Danny gets on the bus and sits with his friends. As they are talking, he feels an urge to lift his shoulders. It’s all he can think about and decides that a little shoulder movement isn’t going to cause attention to him so he does that tic and for a few moments he feels relief.  Then, he feels pressure building up in his arms and knows that if he tics, there is a chance he will punch the seat in front of him so instead of succumbing to the feeling, he focuses on tightening his arms, hoping that the feeling will go away. And it does until he exits the bus, but for the rest of the bus ride, all Danny can think about is squeezing his muscles as the tension build-up is getting stronger and stronger.  So much so that he has no available resources to talk to his friends.

As he exits the bus, he can no longer control the urge in his arms and is also aware of pressure building throughout his body. He stands still so he can fling out his arms, jerk back his head, and make a loud grunting noise.  It only takes a couple of seconds and when he is re-composed, he is acutely aware of 2 girls standing near the school door, laughing and pointing.  Danny feels a sinking feeling but is used to this, he ignores it, walks into the school, and starts to feel the premonitory urges build up once again.  As he heads down the hallway he wonders if there will be a lot of kids by his locker. He knows that if there are, it could set off his tics again if they get too close or touch him. If he’s touched on his left shoulder, he needs to touch his right shoulder. The closed in feeling will increase his urge to tic. Just the thought of this, combined with not knowing what to expect, starts to make him feel nervous. As he is reaching his locker, he sees only 2 boys there and feels some relief, but then all of a sudden he is aware of building tension in his mouth and throat and before he knows it he lets out a shriek. The kids turn and he feels humiliated. But, he knows if he doesn’t hurry up he’ll be one of the last people in the classroom, and walking into a crowded classroom increases his urge to tic, so he ignores the stares and continues to his locker.

Once in the classroom, Danny is continually assessing the situation.  It’s a constant effort of managing and mediating situations, both internal and external.  “Do I tic now so I can alleviate the pressure because if I don’t it will be more embarrassing later on?”.  “Should I go to the nurse and say I’m sick because I know that having to be in a quiet library will set off my tics?”.  “Will my teacher make me work with the kids who were just making fun of me? If so, I know I’ll be nervous and my tics will increase.  That will make  the whole day bad and it’s only 9:00 a.m.”   “If I go to the library I can try to hold in the tics but that’s not a good long-term strategy because then they’ll all come tumbling out in Social Studies. But maybe it’s worth it because the worst place to tic is in a quiet library.”  All the while, Danny is trying to listen to the teacher, trying to suppress some tics, but still ticcing, and then trying to ignore the stares and murmurs.  Now it’s 9:30 a.m. and he can’t wait to go home and take a hot bath because he knows his body is going to be in so much pain from ticcing and his brain is going to be so tired from trying to hold everything together.  “And my mother wonders why I’m so crabby when I get home,” he thinks to himself.

What does the teacher see?

Let’s look for a moment at the same situation from the teacher’s perspective.  She sees Danny walk into class seeming okay because he’s not ticcing. Of course she has no idea that already twice he’s been embarrassed by his tics, been laughed at, and that his arm and shoulder muscles are hurting from trying to contain the tic.  She notices a few tics but since they are slight shoulder and hand tics and a couple of eye blinks she again assumes he’s doing okay. Then, as she is talking about the group project she notices that Danny doesn’t seem to be listening.  She wonders why such a smart boy always seems to be daydreaming. She calls out his name and tells him to pay attention, which he does immediately.   Then, as they are lining up for library she commends him and tells him she is proud of him for controlling his tics.  “If only my teacher knew how much effort it takes, how stressed I am all the time thinking about it, and how tired and bad about myself I feel by the time I go home. If only she knew that when I say I have to go to the bathroom it’s really because I want to release my tics. If only she knew how much the comments and stares bother me. If only she knew that the reason I have trouble starting my work is because the pencil on my paper needs to feel “just right” or I’ll need to erase and start over again. If only she knew that the reason I stop working so much is because my socks don’t feel right and I have to adjust them until they do.  If only she knew.

As seen above, TS causes a constant struggle between the mind and the body.  Ticcing is no different than blinking or scratching an itch.  No one WANTS to tic, yet the urge becomes so strong it is virtually impossible to block it.  If the child controls the blinking, it might come out in squeaking. What’s better, what’s worse, when to do it?  The mind of a Touretter is constantly navigating a body that is out of control.  It’s annoying, discouraging and, at times, self-defeating. And, most bodies with Tourettes usually have additional disorders with which to contend.  So, Danny’s scenario was really quite “tame” as compared to most kids with TS. The tics are just the tip of the iceberg.  Add on ADHD, OCD, Depression, and/or Learning Disabilities and the “perfect storm” is created.  Put that child into a class where the teacher, understandably, has a difficult time knowing how Danny feels, alongside kids who either make fun of him, are scared of him, get annoyed with him, or “put up” with him at the risk of losing other friends who think Danny is “weird.”  Layer on top of that parents who are worried about their child, don’t feel like anyone else understands them, becomes alienated from friends and family, is frustrated by the notes home from school wondering why Danny can’t finish his homework (well, if he can’t finish it during the day he’s probably not going to be able to do it at home, either), frustrated with the lack of medical options, and feeling so guilty and so bad for their son who comes home every day with sore muscles, an exhausted mind, and feeling very beaten down.

Resources

  • Illinois Tourette Resource Network This group provides 3 support group meetings a month, monthly family activities, adult activities, online support, and workshops. They also provide speakers, teacher in-services and peer in-services.

Bliss, J. “Sensory experiences of Gilles de la Tourette syndrome.” Archives of General Psychiatry 1980; 37: 1343-1347.

About the Author: Shari was the 3rd person in IL to be diagnosed with Tourette Syndrome (1976). Her parents co-founded the IL TS chapter along with several others, including Joe Bliss. In 1978, while at a board meeting in her parent’s home, Mr. Bliss told Shari about his theory of premonitory urges and provided some tips and tricks on how to control the tics. It was the first time Shari felt “understood” and attributes much of her success to Mr. Bliss and his strategies. She co-founded the Illinois Tourette Resource Network in 2014 and is honored that she can continue the legacy of providing TS support to the Illinois community.

Shari Meserve

Shari Meserve

Shari Meserve, M.S.Ed., Ed.S. is a certified School Psychologist. She received her Master’s of Science in Education from National Louis University in 1997 and her Educational Specialist Degree in School Psychology from NLU in 1999. She worked in various schools north of Chicago for 13 years. In her role as school psychologist, she has extensive experience working with and advocating for children and adolescents with a wide variety of disabilities and impairments. Her responsibilities included evaluations and observations, leading special education teams, developing IEPs, providing direct counseling services, conducting Functional Behavioral Assessments and developing and implementing Behavioral Intervention Plans, and consulting with staff, administration and parents about appropriate strategies and programs for students. Out of a growing desire to use her skills to help a wider range of children and families obtain appropriate services and supports, Shari left the public school system and worked at a special education law firm. In January of 2014, Shari founded the Illinois Tourette Resource Network, a nonprofit organization serving those impacted by Tourette Syndrome and the Related Disorders. Prior to the inception of ITRN, Shari served on the Board of Directors for the Tourette Syndrome Association of Illinois and the Tourette Syndrome Camping Organization, at which she worked as the resident psychologist for seven summers. She also worked part-time for an executive functioning coaching company, where she coached students who have EF difficulties. Prior to becoming a School Psychologist, Shari devoted her career and volunteer work within the disability and mental health communities. She volunteered at places such as the Salvation Army Home for Unwed Teens, the Youth Organization Umbrella, the Council for Jewish Elderly, several Chicago Federation Youth Homes, and the Lake County Council Against Sexual Assault. Additionally, she worked at the Lambs Farm and Big Brother/Big Sister. Shari also served as the Inclusion Coordinator at a non-special education residential camp, training staff and working with the campers who had special needs in order to ensure a successful camping experience. Shari enjoys sharing her knowledge with parents and other professionals and has presented workshops for a number of professional agencies including Rush University Medical Center, the Obsessive-Compulsive Foundation of Chicago, and the Legal Assistance Foundation of Chicago. Shari speaks on topics such as Basic and Advanced Advocacy Skills, Special Education Eligibility in a Response to Intervention Model, Understanding Test Scores, What to Look for in an IEP and How to Improve It, Executive Functioning, and Tourette Syndrome.

More Posts - Website

3 replies
  1. Will Hazzard says:

    After being diagnosed with Tourette’s almost 8 years ago, my life has been hell. Almost every minute of every day is spent focusing on tics and ticcing, it is so exhausting. I have never been able to fully explain what it is like to live with it as I still don’t quite fully understand it myself and no one else understands. Which is why I loved reading this post so much. I thank the author of this post so much. It has allowed me and will allow others to realise why I am incapable to do certain things. I will share this with all my friends and family.

    Reply
    • Shari
      Shari says:

      Will, I am so sorry to hear how much you are struggling. If you are in the Chgo area please consider connecting with our support group where you can meet other adults with TS and find resources that might be helpful to you. Even if you are not in the Chicago area, you can join our closed FB group at https://www.facebook.com/groups/illinoistourette/. It’s a very supportive group of people who truly get what it’s like to have TS. If you want resources in other states feel free to contact me directly at 877-486-4140 and I will do my best to connect you with appropriate people. Living with TS is a daily struggle for many people but the fact that many others have learned to successfully live with it speaks to the possibility it can be done. If there is anything you think I can do to help you, I’m happy to try. Shari

      Reply
  2. Kelly says:

    Very well written and original article. Original because I have never read or heard the voluntary nature of TS discussed in detail. Your examples were great. I do agree with your ideas. I also am pretty sure that TS has other sides to it also. Its sooo complex. My 11 yr old son for example is so erratic, hyper and unexplainably driven by a motor, that he seems to bypasses the premonitory urge and thought process…he just tics. He does however hold in and modify tics at times which I know, does “seem” to negate my earlier claim that he’s not in tune with his premonitory urges. He’s SO complex, it’s almost impossible to explain/understand him. That leads me to my last comment…I feel TS can’t be discussed without discussing comorbids. OCD, ADHD, sensory issues, LD and social issues are intertwined to where you can not differentiate any of it. My kid touches all of the untouchable things, tics, he climbs on the roof, tics, drills holes in the wall, cussed, tics, obcesses over time and distance, hoards, taps symetrically….etc etc. He’s naughty at school and home. He squeaks every few seconds. People like us need answers. We need OT’s that know ts kids. What kind of breaks, fidgets, systems need to be set up at school for them.? Do they need swing sets at home, different diets? We’re winging it and to be honest, the fear of criminal behavior and drug use and severe depression in my son’s future scare me so bad. He’s cute and sweet now but I see scary things in his future. The worst of it all is that to school and to others, he’s labeled as a bad kid even though they are aware of his diagnoses. Because he looks “normal” he’s expected to behave normally and as his mom, I can clearly see that a lot of times, he just can’t.

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

*