My Story With Tourette Syndrome

Today, I’d like to share something close to my heart.  Tourette Syndrome Awareness Month is May 15 to June 15, with the annual Tourette Syndrome Awareness Day on June 12, 2022.  Tourette Syndrome was named for a French neurologist, Dr. Georges Gilles de la Tourette, the first to describe children and adults with specific tic movements in 1884, publishing his study about this syndrome in 1885.

I’ve had Tourette’s since age 10-11, starting within a year after my family moved from farms in upstate New York to city life in Clifton, New Jersey… the city where I was born and my dad grew up, and where his family lived.  It was an extremely emotional, disruptive time in my life to leave behind my close friends and the country life I loved.

I’ve always believed it was that stress which precipitated my tics, but now understand there is a genetic component, though I have no idea who had it in an older generation.  Most of my life I’ve been embarrassed and ashamed to admit I have Tourette’s. Nor did my parents know what to do about it. I was initially mocked, and quickly learned to hide or camouflage the tics with movements that wouldn’t be recognized as readily.  I am constantly “on alert”.  Though I can generally successfully “hide” the tics, or so I think, they have to have an out and are worse when I’m away from the public eye.  

I’ve called the tics my “habit”, but never had a diagnosis until reading a letter in either Dear Abby or Ann Landers’ column in my early-20s.  Diagnosing myself from the description in that letter and response by the columnist, I felt such a relief to give my affliction a name!  Still, I only shared this information with my husband and closest family.  Though embarrassed and ashamed to see myself with tic movements in a family video, I have not let Tourette’s control my life or employment.  I was afraid of passing it on to my children, but I wanted and was blessed with a family.  I’m aware of the tics, and am able to control them – only somewhat.  But, I’m also thankful they are considered “simple” tics.

Just as I’ve been ashamed of my movements, so my husband was ashamed of being legally blind growing up. He couldn’t see the school blackboard with his limited vision, even sitting in the front row, and would not ask for the help he needed.  Kids don’t want to be different from their peers.  When they have a noticeable difference, they are too often teased or mocked like my husband was, and become ashamed of who they are… with too often devastating effects, like suicide.  It’s up to us as adults, and even children, to be aware of the issues that others around us are dealing with.  If we provide support, acceptance and encouragement, we will each see ourselves for who we truly are – uniquely created in the image of God.

Last year, subbing with 5th graders, I was surprised one day to be asked by a student if I had Tourette’s.  Seeing no point in denying the obvious to those sweet innocent eyes, I replied, “Yes, I do.  But how do you know about Tourette’s?”  As kids do, they apparently talked amongst themselves and others began asking me questions.  This led to their teacher setting aside time for me to share what I knew about living with Tourette’s and answering their many questions.  It was an informative session, endearing these students to me for their kindness and lack of mocking or belittling – they simply accepted me for who I am, just as I accept each of them.

Tourette Syndrome is one type of tic disorder, meeting certain medical criteria of involuntary, repetitive movements and vocalizations, lasting for specific lengths of time.  My “simple” tics include, but are not limited to, sudden brief, repetitive movements of certain muscle groups like hard eye blinking or scrunching (the first symptom for most, including myself), facial, mouth, and head movements, shoulder shrugging, arm, hand and finger movements, head and shoulder jerking, leg and foot movements, throat clearing, repeating words or phrases verbally (or in my mind), and more.  I have an arthritic bony prominence of my collarbone from decades-long shoulder shrugs, and thoracic spine pain/arthritis from prior movements.  The tics wax and wane, change muscle groups at whim, and become much worse under stress. 

Though the tics have never gone away, they often subside, albeit briefly, when I’m fully absorbed in something like singing, sleeping or designing paintings.  Totally absorbed while playing intently with my toddler son years ago, my step-mother commented that my tics had totally stopped during that brief window of time.  That was the first time I realized there really were times when “my habit” stopped!

Tourette Syndrome is a neurodevelopmental disorder with typical onset in childhood or adolescence.  Chemical imbalances in the brain, environmental factors, or genetics are considered causative factors.  There is no cure, but there are some treatment options.  About 30 years ago, I was officially diagnosed by a neurologist and prescribed medication.  Unfortunately, even at the smallest dose, and taking half a pill, the dopey side effect for me was worse than dealing with the tics, so I declined further medication.

I do not have “complex” tics which include distinct patterns with multiple muscles and movements, hopping and twirling, head banging, and more.  Vocal tics can include sniffing, throat clearing, shouting, saying words or phrases, and repeating what was heard.  Though swearing and unacceptable language are found in a small percentage of Tourette cases, the media often describes coprolalia as a more common symptom.  My heart goes out to those with this more severe and disruptive range of tics, some of whom may qualify for disability benefits.  Many with Tourette’s also have other diagnoses including obsessive-compulsive disorder, hyperactivity (undiagnosed in me!), attention deficit/hyperactivity disorder, and learning disabilities.  

Guidepost magazine once featured contemporary Christian music singer, Jamie Grace, sharing her diagnosis of Tourette’s.  Reading the article about her, I burst into tears just to know that someone else has it and has overcome it, too.  I always felt so alone, never knowing anyone else with Tourette’s until I opened up about it a few years ago on Facebook.

Looking at this from God’s perspective, I find it comforting to know He sees me for who I am, Tourette’s and all.  He has a greater purpose for our lives as we bring honor and glory to Him in all that we do, even with our limitations.  More often than not, as we go through the trials of life, that’s when we learn how to trust and rely on the Lord the best.  For He uses us and our difficult circumstances to reach others who may be dealing with similar issues, bringing love and comfort to them in a way that’s as unique as we each are gifted individually.

To learn more about Tourette Syndrome and how to handle the emotional and physical challenges, go to their website:  https://tourette.org/  Read shared personal stories at: Home | Mytourette

Linda Roorda writes from her home in Spencer.