My Son’s Tourette Syndrome Combined with My Misophonia (Noise Sensitivity) Almost Ruined Our Relationship
Until I found a miraculous answer that changed everything
My son was diagnosed with Tourette Syndrome when he was four. This condition involves uncontrollable tics that wax and wane in nature and last up to one year.
What Does Tourette Syndrome Look Like?
Tourette Syndrome involves tics that are unpredictable in nature and, just like your crazy Uncle Wallace at Thanksgiving, you simply don’t know when it’s going to show up and totally take over. Plus, to make matters worse, just when you think one is gone, another one shows up. And this time, like your nutty Aunt Marge, it brings friends in the forms of shoulder rolls and head nods.
The Emotional Effects of Tourette Syndrome
This condition hit me pretty hard. For years I felt like a bad mother that when he’d make a beeping sound or a vocal click I’d want to hide. In fact, sometimes I did. My car and a good pair of headphones became my sanctuary, but it wasn’t enough. I was always waiting for the sound that might slip through the ear plugs or my son to yelp just outside my window. It was as if the idea of the sound was even worse than the sound itself.
I’d like to say that I never yelled at my son, “Can you just! Please! Stop!” Because someone with Tourettes can’t control their ticking, so for me to beg and plead for him to be as quiet as his docile sister would just be obnoxious. (But I did. I hated myself for doing it, but I did. And I did it enough times that I knew if I didn’t stop I would ruin our relationship.)
The Healing Power of Community
To combat my frustration — because the last thing I wanted to do was take out my irritation on my precious boy — I started a support group called Twitch and Bitch. In this private group, we’d share strategies for helping our kids navigate this confusing disorder. It was a game changer for me and for everyone involved.
We’d share photos of our precious children who, despite being slapped with a label we weren’t expecting, were totally normal kids: going to school, hanging with friends, playing video games. The best part of this group? We’d support each other and allow ourselves, as tired moms, to be brutally honest about our fears.
After going so far as to having a book published about Tourettes, I one day stopped writing about the disorder altogether. Part of that is because I needed to switch to a new direction for my own mental health. After spending years obsessing about changing my son, and then taking things way too personally in how other people reacted to him (Overly Controlling & Sensitive Mom Behind Door #3!) it became imperative to write about my other passions.
Also, my 13-year-old son got tired of his syndrome being written about. If I learned anything from raising a teenage boy, it was to honor his needs, not mine, when it came to writing. And so, I cut the internet cord! (And I didn’t even need anesthesia.)
That said, when I came across this fellow Better Humans article about misophonia, I had a light bulb moment.
What if I wasn’t a narcissistic loser mom? What if I just was super sensitive to noise?
What Exactly is Misophonia?
Harvard Health Publishing (from Harvard Medical School) describes it as follows: “People with misophonia are affected emotionally by common sounds — usually those made by others, and usually ones that other people don’t pay attention to. The examples above (breathing, yawning, or chewing) create a fight-or-flight response that triggers anger and a desire to escape.“
Audiologists have found that misophonia is an inner ear issue as sufferers have acute hearing. What makes their hearing different than another person with exceptional ears is that unlike a “normal” person, misophoniacs obsess about the sound long after it’s gone. They anticipate when it’s going to come back. And often they cannot sleep for fear of it interrupting their serenity.
Where Does Misophonia Come From?
Many folk with OCD deal with this (which I was diagnosed with… Ding! Ding! Ding!) but it’s not considered a mental health issue. Misophonia hasn’t been researched much, but according to WebMd:
“The age of the onset of this lifelong condition is not known but some people report symptoms between the ages of 9 and 13. Misophonia is more common with girls and comes on quickly, although it doesn’t appear to be related to any one event.”
Symptoms of Misophonia
- Impulse to run
- Fantasy thinking
How Did I Not Know About Misophonia?
For a long time I didn’t know I had this disorder. I just thought I was nuts. My son’s throat clears and grunts would make me insane with anger. I would either rage at him, begging him to channel his sounds a different way, or I would find myself running away.
Escape took many forms: literally leaving the house, not being present when I was with him, over spending and eventually drinking. Sure drinking took the edge off temporarily, but the sounds only felt more excruciating the next morning with a headache. It felt hopeless.
Relief from Misophonia
After giving up drinking, I was thrilled that my 12-step program had relieved so many of my unhealthy escape patterns and reactions. Hypnotherapy and meditation was also a powerful, natural sedative for my overactive brain, but it didn’t relieve all of it.
It wasn’t until the Medium article (and ironically someone in my daughter’s friendship circle who was diagnosed with misophonia) that I realized I had been going down the wrong road for a decade. I had been trying to change my son’s outer noise to make me feel better, when in reality I should have been dealing with better ways to process the sounds and leaving my poor child alone so he could live his life in peace. (Fun fact: My sweet boy had no issues with his Tourette Syndrome which, well, made my whole chase toward a cure that much more insane.)
Misophonia and Creative People
I was somewhat relieved to learn that this condition plagues people who are highly sensitive — a trait I had always seen as a weakness. I found out that, quite the contrary, it was my empathetic nature that caused me to zone in on unpleasant sounds, but also it inspired me to create beautiful art.
Writer Franz Kafka, French novelist Marcel Proust and playwright Anton Chekov battled this beast their whole life. In a weird twist of irony, it turns out that the very thing that causes misophonia sufferers distress is the same thing that allows them to so sensitively tap into the human condition.
When Does Misophonia Rear It’s Head?
I’ve talked to many folk since my diagnosis and the one thing we’ve all had in common is that we are more triggered when we are stressed out. It was a sick co-dependent vortex in my case, because my son also ticked when he got stressed. His tics made me more ragey due to Misophonia, and that made him tic more. Are you seeing the swirly? Fun times! What next?
There’s No Quick Fix for Misophonia
After trying a million miracle cures to “fix” my son (from medication and meditation to gluten-free/dairy free diets and more supplements than Frankie Bergstein has joints) I made a decision to stop the madness. Like in a bloody war battle, I had two choices: My relationship with my son could die based on my insane need for control, or I could surrender. I chose the second and my life has been on an upswing ever since.
The Spiritual Side of Misophonia — And My Cure
In relinquishing my need to manage my son’s noises, I began to control my own issues with sounds. As a sober alcoholic I knew only too well what a lack of discipline did to my life. And, just like with giving up alcohol, I knew I didn’t have to handle my diagnosis, and my son’s, by myself.
I leaned on my community and family.
I began a spiritual practice.
I practiced amazing self-care.
I gave myself permission to not be a perfect mother.
I reached out to others who were dealing with a diagnosis they could not change. In helping others, I was infused with such purpose and hope.
It turns out you really can’t obsess about your own problems while helping someone else navigate their’s.
Plus it turns out that the endorphins from assisting others lasted much longer than any temporary relief from noises. And, unlike misophonia, they brought about so much peace.
The Hope of a Condition That Has No Cure
There is some serious humor in God pairing a noisy ticker with a sound sensitive mama, but now I wouldn’t change it for a thing. Tourettes and misophonia forced me to give up any preconceived ideas I had about what I needed to be happy.
When I was able to surrender, I channeled my misophonia into listening for the blessings in my life instead focusing with laser beam precision on the negatives. Acceptance and transformation of what was once so ominous has brought about far more joy than any quick fix for these syndromes could.
If I Can Do It, You Can Do It
Any fellow misophonia folk out there… it gets better. And when you’re struggling, feel free to reach out or leave a comment hear on Medium. You might say, beyond a shadow of a doubt, I “hear” ya.
I’m a mama of two beautiful teenagers and wife of, gasp, 20 years. I’ve written for BabyCenter, Good Housekeeping, television, corporate blogs, newspapers and am the proud author of the book Happily Ticked Off. More of my writing can be found on my blog, Happily Ticked Off.