Before I met my husband, I had an inaccurate and incomplete knowledge of what Tourette syndrome was. Like many others, I have seen the condition depicted in the media, but characters who exhibit Tourette syndrome are almost always used for comedic relief, through involuntary jerking motions (tics) or the inappropriate use of obscene language (coprolalia). In reality, coprolalia only affects 6-10% of people with Tourette syndrome. Although the media is increasing awareness of the disorder, the true nature of Tourette syndrome is often misrepresented.

Full Disclosure

My husband told me he has Tourette syndrome during the very first conversation we had. We met on a dating website and were speaking on the phone for the first time before meeting in person. He wanted to reveal this piece of information about himself early, before things got serious between us, to make sure it was something I would be okay with. At the time, I wasn’t aware just how big of an impact it would have on our lives, but his disorder does not take away from the amazing man that he is and the incredible relationship we have built.

Diagnosis

In order to be diagnosed with Tourette syndrome, a person must:

  • exhibit two or more motor tics (ex: blinking, shrugging the shoulders) and at least one vocal tic (ex: humming, clearing the throat), 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

Along with the tics, there are several other comorbidities that are frequently observed in people with Tourette syndrome, including OCD, ADHD, sleep disorders, anxiety/mood disorders, depression, rage attacks, and migraines. Among people with Tourette syndrome, 86% have been diagnosed with at least one other comorbid condition.

Getting Personal

My husband’s tics are not as severe as many others who have Tourette syndrome, and few people notice that he has tics at all. However, this is the result of a lifetime spent learning to control and disguise them, rendering them almost impossible to detect when he is in public. My husband also suffers from chronic anxiety, OCD, ADHD, and also struggles with depression, sleep disorders, and rage at times. These comorbidities are what make daily life much more difficult for him to handle than the typical person.

In the beginning of our relationship, I didn’t understand why he let such small things bother him so much or why he would sometimes retreat into a depressive fog where it felt like I couldn’t reach him. It made me feel helpless, and it made me believe he was reacting in response to something I said or did. As time passed, and as the communication within our marriage improved, I developed a better understanding of the challenges that plagued my husband’s mind on a daily basis. I learned how best to support him in his times of need, and he discovered resources and tools to help him work through his mental obstacles. Although the struggles still exist, we are able to work through them as a team.

My husband first showed symptoms of Tourette syndrome at the age of three and was formally diagnosed at age seven. When his mother noticed that he was spitting and told him to stop, he said that he couldn’t. Because my husband’s father was diagnosed with Tourette syndrome in his 20s, his parents were keeping a vigilant eye for symptoms, and they realized at a young age that he had the disorder as well.

Inheritance

Genetically speaking, Tourette syndrome is an autosomal dominant disorder, meaning a parent with Tourette syndrome or the gene has a 1 in 2 chance of passing on the gene to each child. Boys are three to four times more likely to manifest symptoms than girls. Tics usually appear in children between the ages of 5 and 7 years.  This information was ever present in the back of my mind when my husband and I decided to start trying to get pregnant, when I found out I was pregnant, and when we learned that it was going to be a boy. Knowing that our children would have a 50% chance of inheriting the disease did not dissuade us from wanting to have a family of our own.

A 50/50 Chance

At his current age, it is virtually impossible to diagnose our one year old or determine if he is showing any potential Tourette syndrome symptoms.

He discovers new noises, tries out new motions, and reaches new levels of mobility every day, all of which are in the normal category of developmental traits for a baby his age. When he was seven months old, I noticed my son leaning backwards, looking up towards the ceiling, and shaking his head back and forth. He did this multiple times in a span of a few minutes. I tried not to think too much of it, but I couldn’t help Googling what he was doing to figure out if it was “normal.” What probably happened was that he discovered how to make himself dizzy and lightheaded and was experimenting with that sensation. He stopped doing it after a few days.

It’s difficult to keep the thoughts of a potential impending diagnosis at bay. Obviously, we hope that our son will not have to experience the obstacles that a Tourette syndrome diagnosis would certainly bring into his life. However, if he does have the disorder, we are very well equipped to be able to help him navigate a life with more unique challenges than he otherwise would have encountered. With or without a Tourette syndrome diagnosis, we will strive to teach him not to let hardships be a discouragement but rather a motivator to become the best person he can be.

Visit www.tourette.org or read this brochure for more information about Tourette syndrome.

 

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8 COMMENTS

  1. Great post and that baby is simply adorable. People often blow Tourette’s Syndrome out of proportion. It’s great to read something online not dramatizes the medical condition but being accurate and informative instead. Well done!

    • I’m glad you found the post useful! I’m hoping to spread awareness and accurate information about this condition, which has so many misconceptions, and sharing my own personal connection with it at the same time.

  2. One of my swimming team members back in the day had tourette syndrome. Nothing much so no one really even noticed it even though we saw each other daily for several hours. He only told about it much later after causing several false starts at competitions as his ticks tend to happen in moments of great “pressure” e.g. the intense moments before jumping into the pool.
    Only after telling us about the exact ticks we started to notice them actively.
    Anyhow he has three kids by now and thus far none have shown any signs, even in his whole family he has been the first one as far as they know.

    • That’s very interesting! The inheritance probability is just a guess at this point because they haven’t pinpointed the gene, but it does show up quite a bit in families.

      I’m sure it was more difficult for him to get the right diagnosis, being the first one in the family.

  3. What a personal post, thanks for sharing that. By the way, you LO is so adorable! Very insightful read and kudos to your hubby for his transparency to you in the very beginning. Great foundation to build a relationship on!

  4. I find it brave of you to share and reveal such a personal challenge. I can only imagine what you and your husband have gone through to overcome and understand tourettes.

    By the way, I’ve been meaning to tell you that I like your new blog header 🙂

    • It has been a learning experience for me, and I hope that others who are going through similar struggles will not feel so alone.

      Thank you so much! I cannot take credit for the design, but I’m really happy with how it turned out.

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