At 60, Melissa Gilbert Reveals ‘Agonizing’ Neurological Disorder
Melissa Gilbert opened up about her experience with the neurological disorder misophonia.
She has struggled with it since she was a child, she said.
She just recently found treatment and is raising awareness in hopes of helping others.
From colonoscopies to neck surgery, Melissa Gilbert has always been open about the ongoings of her health. But it took a lifetime for her to understand, put a name to, and talk about a specific struggle—her experience with the neurological disorder misophonia.
Since her days on the set of The Little House on the Prairie, Gilbert has involuntarily reacted to certain sounds—gum chewing, nail tapping, pen clicking—with intense anger and distress, a condition she now understands as misophonia. “I would want to run away so badly,” she told People. “I would turn beet red and my eyes would fill up with tears and I’d just sit there feeling absolutely miserable and horribly guilty for feeling so hateful towards all these people—people I loved.” She called it a “really dark and difficult part of [her] childhood.”
The debilitating moments also happened at home. At the dinner table, she would glare at her family as they ate. “I really just thought that I was rude. And I felt really bad. And guilt, which is an enormous component of misophonia, the guilt that you feel for these feelings of fight or flight. It’s a really isolating disorder,” she explained.
Even as a mom, Gilbert struggled to control her impulses when trigger sounds erupted from her kids. “I had a hand signal that I would give, making my hand into a puppet and I’d make it look like it was chewing and then I’d snap it shut—like, ‘Shut your mouth!’” she recalled. “My poor kids spent their whole childhoods growing up with me doing this. They weren’t allowed to have gum.”
What is misophonia?
Misophonia is a disorder where you have a lowered tolerance to certain noises. While it doesn’t yet have official recognition as a distinct disorder, experts still recognize it, according to the Cleveland Clinic. Gum chewing and loud eating noises are common triggers of misophonia. Others include the rustling of paper or plastic, water dripping, and heavy breathing. In addition to the intense anger, anxiety, and irritation that Gilbert explained, people with misophonia may also experience physical symptoms like an increased heart rate, chest tightness, and raised blood pressure. For some people, the condition can even lead to social isolation to avoid triggers.
“My worst triggers were and are open-mouthed chewing sounds. There are different levels of bad though,” Gilbert said in a Q&A with the Duke Center for Misophonia and Emotional Regulation at Duke University’s School of Medicine. “Gum chewing sounds are bad, but popping and snapping gum are worse. Loud chewing of food is bad, but chips of any kind and popcorn are agonizing. Nails tapping on a table and clicking pencils can be triggering and sometimes even finger snapping or hand clapping. The last one being a particularly interesting problem, considering I love being on stage.”
To make matters worse, Gilbert’s sensitivity to triggers was heightened by menopause. “I was more touchy,” she told People. “As the estrogen leaked out, the anger seeped in and it started to really affect me on a daily basis with loved ones.”
How Gilbert finally found treatment
It was only recently that Gilbert was able to put a name to her symptoms and seek help. After doing some research, she found the Duke Center for Misophonia and Emotional Regulation. “I sobbed when I found out that it had a name and I wasn’t just a bad person,” she said.
Now, she’s teaming up with the university to raise awareness about misophonia treatment—the most effective of which is talk therapy, per the Duke Center. “For me, absolutely and without doubt, cognitive behavioral therapy changed my life,” she shared. “[It] gave me an incredible toolbox of coping mechanisms. Many of which I use nearly every day. I cannot begin to express how much more peaceful my life is since going through treatment.”
Gilbert did 16 weeks of “intensive” work to reach where she is today, she told People. “Misophonia doesn’t go away, but the therapy I did gave me the coping skills to better control my misophonia and not allow it to totally control me. There is great healing in being able to take charge,” she told the Duke Center.
Now, she hopes others with misophonia, given the right information, can follow a similar path. “I want people to know they are not alone. I know exactly how they feel. I know the fear, anxiety, and fury that come with misophonia and I know there is help,” she said. “Real, true, life-changing help.”
If you or a loved one is seeking misophonia treatment, The Duke Center’s website features a directory of vetted providers.
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