Living with Tourette Syndrome and Dealing with Uncertainty

Panic at The Disco

Living with the Unknown

I can hear you but I won't Some look for trouble while others don't “Into the unknown…What do you want? 'Cause you've been keeping me awake? Are you here to distract me so I make a big mistake?”

Quote, "Change is the only constant."

Uncertainty is defined as “an internal state of not knowing or being unsure.”4

Uncertainty and change is one of life’s guarantees, and it is prevalent more now than ever.   During this Coronavirus (COVID-19) pandemic, uncertainty of what will come and what the world will look like in the near future is a daily concern. 

Unfortunately, living as a person living with Tourette Syndrome (TS), worry about the unknown is a common place. Many people deal with uncertainty around how others might perceive their tics, what will set the tics off, or even what will life will look like as an adult.  Specifically, research in difficulties with dealing with uncertainty, has been shown to be associated with OCD, anxiety and worry in young people. Due to these conditions being common co-occurring conditions with TS, it is particularly troublesome for our children and loved ones living with TS to deal with the uncertainty of COVID.

Researchers have started to study the intolerance and discomfort of living with uncertainty.    What research shows is that intolerance can lead to increased autonomic nervous system response and an increased fight or flight reaction.  With our TS loved ones, this can present in worsening symptoms such as an increase in tics, increase in anxiety and/or increase in emotional outburst.   In addition, not only are people living with tics prone to this intolerance of uncertainty, so can the family members who are concerned about their loved ones.  We hear many questions about “will my child have to wear a mask at school all day” or “what will happen when my child has a cough tic at school?” Unfortunately, in regards to the future of COVID, healthcare providers and physicians are unsure of how to answer those questions, which can lead to an increase in that uncertainty.

You might recognize the signs of uncertainty in your own household:

cycle of worry
(Herbert & Dugas, 2019)
  • Seeking reassurance or double checking
  • Struggling with lack of schedule or routine
  • Procrastination
  • Asking many questions
  • Hard to make decisions (such as future planning)
  • Excessive or new worry
  • Extensive time dedicated to trying to find solutions
  • Avoidance of new situations

This fear of the unknown can lead to a crippling cycle of worry that is difficult to manage.  Experts know that uncertainty is a guarantee and inevitable, despite our best efforts at controlling it. However, experts emphasize that this uncertainty does not have to cripple you and does not have to control you or your loved ones daily lives. Healthcare provides studying this intolerance to the unknown recommend several strategies on how to manage this worry.

Uncertainty and control graphic
(Parchment, 2020)
  • Stay mindful
  • Try to control only what you can control
  • Try to live in the present…take one day at a time
  • Participate in self-care
  • Learn to challenge uncertainty
  • Learn to tolerate the uncertainty
  • Cognitive behavioral therapy (CBT): Historically, CBT has been shown to be effective in the management of anxieties and worry in young people.  CBT focusing on recognizing triggers, becoming mindful of symptoms of worry, and learning to manage the discomfort of that uncertainty.

As Heraclitus stated, “the only constant is change.”  Knowing this, during the time of COVID, challenging the worries about the unknown is important. If you or your loved one is struggling with intolerance to uncertainty, reach out to your healthcare provider to find resources closer to home.

Reading Resources


  1. Birrell, J., Meares, K., Wilkinson, A. & Fresston, M. (2011). Toward a definition of intolerance of uncertainty: A review factor analytical studies of the Intolerance of Uncertainty Scale. Clinical Psychology Review; 31 (7): 1198-1208.
  2. Clark, D. (29 March 2020). Living with Uncertainty During COVID-19. Retrieved from
  3. Cunic,A. (7 April 2020). Intolerance of Uncertainty Therapy for Generalized Anxiety Disorders.  Retrieved from
  4. Herbert, EA, Dugas, M. (2019). Behavioral Experiements for Intolerance of Uncertainty: Challening the Unknown in the Treatment of Generalized Anxiety Disorder. Cognitive and Behavioral Practice; 26(2); pp. 421-436.
  5. McNaulty, M. (9 April 2020). Coping with Uncertainty During COVID-19: An International Gottman Trainer Shares Their Perspective. Retrieved from:
  6. Osmanağaoğlu, N., Creswell, C. & Dodd, H. (2018). Intolerance of uncertainty, anxiety, and worry in children and adolescent: A meta-analysis. Journal of Affective Disorders; 225: 80-90.
  7. Parchment, R. (March 2020). What can you control right now [PICTURE]. Retrieved from
  8. Robinson, L. & Smith, M. (April 2020). Dealing with Uncertainty During the Coronavirus Pandemic. Retrieved from: