Haunting For Good: Manhattan Family Raising Awareness For Misophonia

MANHATTAN, IL — There are some sounds that most people find aggravating or even irritating, such as nails on a chalkboard, silverware scratching a plate or people screaming at each other. But, for people with a condition called misophonia, sounds that might be benign for many — such as the sound of someone chewing gum, or the sound of a particular person's voice — can cause extreme reactions, including anger, aggression and anxiety.

Paige Hesser is one such person affected by misophonia. The 14-year-old Manhattan resident struggles daily with the sensory disorder. She is often forced into isolation, even from her own family, in an attempt to escape the overwhelming response her brain produces when she hears certain "trigger sounds."

Paige first began experiencing misophonia symptoms when she was 12. It started at the dinner table. Paige started to show signs of lashing out when the Hesser family would gather for meals.

"Paige just started to have a real bad aversion to sounds with us eating dinner together," said Paige's father, Michael Hesser. "She would get really upset and really angry and kind of lash out, like, 'Can you guys stop doing that.' And we thought that, frankly, it was rude. It was just our first reaction."

Her family, and Paige, couldn't understand why she was suddenly acting that way. This went on for months. Though they couldn't yet identify what was causing Paige such clear discomfort, they knew that something had to be going on because all of that was not normal behavior for her.

"It wasn't like Paige," Michael said. "Paige has never been rude. She's never talked back. It was totally out of character for her to act like that."

Paige's misophonia eventually got to the point where she could no longer eat dinner with her family. She would eat her meals in another room of the house, away from the ones who love her most. And that was just the start of the sacrifices Paige would have to make as she struggled with her condition.

Eventually, the misophonia would begin to affect Paige's ability to be in school, to socialize with her peers, and would even affect her ability to hold conversations with her parents, as those, too, would sometimes be trigger sounds for her.

Paige began to withdraw more and more. She would isolate herself in her room on a nightly basis. She couldn't get help with her homework because the sound of Michael's voice triggered the misophonic reaction. The family even considered learning sign language as a way to help alleviate Paige's symptoms.

Convinced that there was something that was causing Paige to act that way, that it was not a simple case of a pre-teen rebelling against her family, the family set out to find answers.

Misophonia: An Under-Studied And Under-Funded Condition

There is some debate in the medical profession as to what causes misophonia and what treatment is best for those with it. Researchers and medical professionals at Harvard Medical School, Duke University School of Medicine and the National Institutes of Health, for example, have all published scholarly articles and informational blogs about misophonia, but, by-and-large, the condition has historically been under-studied and under-funded. So, it was not surprising that the Hesser family struggled to learn anything about Paige's condition.

Michael, in addition to what little scholarly information he could find, turned to social media to seek out others like his daughter to learn from their experiences. It was there that Michael learned there were many people living with misophonia, some of whom were never aware that it was a real condition until they connected with others who also suffered from it.

"I figured, with the internet, somebody else out there has dealt with this," Michael said. "So, how do they do it?"

Michael came across a blog written by a woman who learned about her misophonia only because of the national lockdown early in the COVID-19 pandemic. This woman wrote about how she discovered, after being forced into isolation with her boyfriend, that she was often triggered by sounds that he would make. Those sounds had been largely hidden before because of other ambient noise, but that was no longer the case in isolation.

"I'm reading this and it's reading like our home life," Michael said. "I called Paige out of her room, and I said, 'Hey, listen to this thing.' And I remember, clear as a bell, [Paige] was sitting there and she said, 'Dad, that's my life. That's me.'"

The Hessers finally had something, some sort of template for which they could use to further their own research on misophonia. Now, the question became: What can we do about it?

"Believe her. Trust her. Don't judge her"

Paige was already seeing a therapist for anxiety at that time. The family approached the therapist to see if that was something the therapist could look into as part of Paige's treatment.

"We called her therapist and said we think [Paige] has this thing called misophonia. It really matches all of her problems," Michael said. "[The therapist] said, 'Miso-what?'"

That would prove to be a similar response from other therapists the family sought out. Not sure where to turn for answers, Michael again returned to the internet and found that the Misophonia Association had very few professionals listed who were able to treat the condition. Although one happened to be not too far away, in Hinsdale, that therapist was booked up for the next couple of years.

So, it was back to social media to look for advice on what he and his family could do to help Paige.

"I hoped on the Facebook group and I said, 'Hey, if anybody has any advice for a parent, what should I not be doing?'" Michael said. "Like, if you could go back in time and say, 'I wish my parents hadn't done this,' because I didn't want to make it worse, so tell me right now what not to do."

Responses began to immediately pour in, including from teens offering advice on what they wished their own parents knew or would do. But, it was advice from one 60-year-old woman who has misophonia that really stuck out for Michael.

"She said, 'You're doing the right thing. Just make sure you're listening to her. Let her tell you what she needs. Believe her. Trust her. Don't judge her,'" Michael said.

The woman went on to describe to Michael how she had suffered from misophonia, and for 30 years her family would not talk to her because "they thought she was rude and ignorant and hateful and overly dramatic over things she didn't like," Michael said.

It wasn't until the woman read an article about 10 years ago published in The New York Times that she finally became aware that her condition had a name and that others also had it, too.

It was a turning point for the Hessers. It was now clear that what Paige was experiencing was very much real, was shared by others and that there was very little understanding of what misophonia is.

Now, the Hessers wanted to do whatever they could to raise awareness, and to continue to help Paige and others like her. And Paige was determined to do her part, too.

"I Think We Should Tell Everybody"

Paige was beginning to slowly learn coping strategies from medical professionals and from regular people who have misophonia. She's learned that listening to music can help her recover after the adrenaline rush that follows a trigger of her misophonia. She especially likes county music. Luke Combs is her favorite.

She continue to suffer from the effects of the disorder, as she likely will for some time to come as she continues to learn more about her triggers and ways to limit her exposure to them, including a recent trigger that she discovered: the sound of her family's car's turn signals.

But, recently something happened that surprised the Hessers. The administration and faculty at Manhattan Junior High School wanted to help educate its students — Paige's peers — about what she was going through and why their classmate was often away from the rest of them.

The school had already at the beginning of the school year instituted a no-gum-chewing rule in Paige's classes without revealing the reasoning behind the new rule.

Additionally, the school dedicated the week of Oct. 11 to misophonia awareness. Students would be taught about misophonia in the classrooms. They would see posters around the school about misophonia. They would even get some quizzes to make sure they were paying attention and absorbing the information.

Those efforts by the school were already above and beyond any considerations given to others like Paige. But there was one more surprise in store: Paige herself would conclude the misophonia awareness week by standing up, in front of her entire eighth-grade class, to give a presentation.

Would she be able to present herself to her entire class as the face behind what they all were learning about? Damn right she would. And she did.

Paige had decided that she needed to tell her classmates about misophonia and how it affects her on a daily basis. She needed to do this because these were not only her classmates, but they were also her friends. And her friends deserved to know what was going on.

"I said to Paige, 'What do you think we can do?'" Michael said. "And she said, without hesitation, 'I think we should tell everybody. I think I should just tell everybody what I have because, right now, they just think [the gum rule] is just a dumb rule. Maybe if they knew why it was a rule, they might pay attention more.'"

So, on Oct. 13, Paige bravely got up and made that presentation, not once, but twice so that her entire class could be there.

"I told them how [misophonia] affects me in school, what kind of triggers happen in school," Paige said. "I just kind of told them what misophonia is."

Paige said she worked with an audiologist on a script that Paige wrote and could read from in order to stay razor-focused on the presentation. The hope being that the focus required for that would help Paige be able to block out any triggering sounds while she gave the presentation. It worked.

"I Might As Well Do Something"

As remarkable as it was that Paige was able to give that presentation, both her and her family aren't finished with their mission to spread awareness of misophonia.

The Hesser family is known in Manhattan for their annual Halloween and Christmas displays, which Michael painstakingly puts together each year simply for the joy it brings to others.

The displays are elaborate, using computers to digitally project images and music on the entire facade of the front of the Hesser family home.

This year, Paige came up with the idea to use the popularity of the holiday displays as a way to reach more people and to fundraise for misophonia research through a non-profit group called soQuiet, which uses donations to provide grants to graduate students who are working to conduct more research on misophonia.

Incorporated into the display is a message that provides those watching with information on misophonia and how to donate to soQuiet, if they so choose.

Those who would like to donate can do so by texting "Quiet" to 53555.

The school presentation and the ongoing fundraising campaign have been just the first steps for Paige in doing her part to raise awareness of misophonia. She said she has aspirations to one day go to college and study to be a neuroscientist so that she can further help others like her with misophonia.

"If I have it, I might as well do something," Paige said.

The Hessers' Halloween display is ongoing at 24361 Shawnee Lane in Manhattan.

For more information on soQuiet, visit the organization's website by following this link.