Help misophonia research, take this survey

This is just a quick post for anyone with misophonia who wants to help contribute to the research effort about this condition. Click here. It looks like the survey will be used to find any commonalities between those who have misophonia and to create data to show that this condition does indeed affect many people in a very distinct way.

I just took the survey and it lasted about 10 minutes. You also can sign up at the end of the survey for an email alert for when the findings are released. I’m not sure how long the survey will be available.

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The New York Times writes article about misophonia

Great news! One of the largest and most reputable newspapers in the world, the New York Times, wrote a story yesterday about misophonia. I’m posting the photo used with the column because I like the way the art expresses this condition.

I recently wrote about why awareness of misophonia is so important to people who have the condition. So, how does the article do when it comes to explaining misophonia?

Here's the art that accompanied the New York Times article on misophonia.

The article is respectful and makes the correct distinctions between misophonia and other conditions, such as hyperacusis. The article also provides some resources for support groups, including:

All in all, a great story. I hope that future articles about this condition might focus on solutions. Clearly there is no cure-all for misophonia, but there are people studying and trying to figure it out. There are also some therapies and medications that are currently being experimented with.

I appreciated the stories shared in the article by people who have misophonia. It is interesting to see how other people cope after I’ve had the disorder for so long and have developed my own unique coping mechanisms. One woman said she has a headache when asking people to quiet down. Another shuts the door to her office at work. I’m an earplug addict, although there are some times at work when I need to be listening to others, and I come into contact with a trigger noise. Just today I was sitting in on a training at work and a man walked up behind me to listen in on the lecture. He was eating an apple. I had to excuse myself to use the restroom, and I missed a large chunk of the training.

I’ve told one coworker — who also happens to be a friend of mine — about my condition, but I don’t think she realizes how it affects me in the workplace. She is constantly trying to talk to me while she is eating or chewing gum, and she complains about not being able to get my attention because I’m always wearing earplugs.

Misophonia awareness matters

I discovered I had misophonia in 2008, more than a decade after I actually developed the condition. I was probably around 12 or 13 and I was at the breakfast table eating cereal with my brother before heading to school. As we sat there eating, I simply began to notice something. My brother was smacking his lips as he chewed his cereal — Frosted Flakes, if I remember correctly. I felt so uncomfortable by the noise that I felt compelled to ask him if he could chew with his mouth closed.

Then I started noticing the noise with other people in my family. My mom smacked her lips while eating, too. She chewed a lot of gum, and I had to leave the room to avoid hearing certain eating sounds. I would want to spend time downstairs with my family, but the second someone went to grab something to snack on, I was walking briskly up the stairs to my room, like clockwork.

Trapped in a car with a gum chewer was torture. If a classmate chewed gum next to me in school, I missed the entire lecture because I couldn’t stop focusing on the noise as resentment and anger bubbled up inside. I cried myself to sleep at the sounds of a muffled television coming from my parents room after my father refused to turn it off.

But possibly the worst part of all, I thought I was the only one. This was before I knew how to browse the Web. All I knew was that nobody else appeared to share my problem, and that my family seemed to regard me as whiny and manipulative. I kept things bottled up inside and suffered silently during everyday events. When I went to the movies with friends, I’m sure they had no idea that I couldn’t wait for the movie to end and that I was obsessing about all of the people eating popcorn or chewing on the ice from their sodas.

I especially made sure not to tell anyone I dated. Finally, when I was 23, a boyfriend and I went on a road trip. We stopped at a gas station, and I saw him head inside and purchase a bag of Doritos. I was overwhelmed by panic, and I was especially concerned because I was the one driving. I tried to remain calm as we drove back onto the highway. He grabbed the bag of chips and opened them. He crunched down on chip after chip and I felt as if I wanted to drive off the road. I came clean with him, and he was the one who looked up my condition online.

I found a Yahoo group of people who had my exact same problem. I read about one woman who had to eat at the far end of the dining room table with music blasting if she wants to dine with her husband. One member of the group said her mother used to chew ice all the time while watching television in the living room, so as a girl, she spent most of her childhood in her bedroom. I spent hours researching what I had and learned there was no cure, and that just a few doctors were starting to research it. But it was amazing to know that I was not alone. I could name what I had and find a support group made up of people like me.

It sounds simple, but knowing I had misophonia changed my life.

A typical day with misophonia

Disclaimer: Suffering exists in this world in many different forms. On this blog, I will share what it is like to live with misophonia. I have loved ones with cancer. Loved ones with crippling addictions and other sturggles. I am in no way saying that my life is worse than anyone else’s. Life can be a challenge for every creature on this planet, and my story is just one example of that.

Today I went to work. As I walked out my front door, I checked once more that I had at least one pair of earplugs on me. As I got on the subway, I made sure my iPod was blasting music. I sat down to notice a woman facing my direction on the car was chewing gum. I looked down at my lap to avoid seeing her chomp down over and over again. Soon it was my stop and a feeling of relief washed over me as I walked quickly through the doors of the subway.

Later, I sat at my desk at work. I had my earplugs in because a coworker was chewing gum. She bit down, causing a popping sound to fly from her mouth. Air pockets in the gum, I suppose. Hearing the sound makes me sit straight up. It’s all I can think about, that sound and how to escape it. It creates a loop of panic my mind that makes it very difficult to focus on anything else. I begin to resent the source of the sound — in this case, my coworker. Why is she always chewing gum? She looks like a bimbo with such a large wad of gum in her mouth. Can’t she spit it out already? It must be completely flavorless and unsatisfying by now. Etc.

The earplugs are my salvation, although some believe they might make one’s misophonia worse over time. Earplugs also make it difficult to communicate with my colleagues. I am constantly being tapped on the shoulder when someone needs my attention. People think I’m strange. I just tell them that I work better with earplugs in; it helps me concentrate. I feel that nobody would understand me if I told them the truth.

During a meeting in the conference room, a coworker taps her foot vigorously, and I can see the movement out of the corner of my eye.  I have to rest my head in my hand in such as way that I’ve blocked my peripheral view of the foot tapping. I wonder if anyone thinks I look strange doing this.

When I get home from work, I wear earplugs if I can hear my housemate clearing his throat in the other room. I hate that noise. I also have to wear earplugs if I can hear my housemates clanking their silverware and plates together while they eat or do the dishes.

I wonder how bad things will get. I have heard misophonia gets worse with age. Will I be able to withstand a typical office environment? Is it possible to sustain a healthy romantic relationship with this condition? If I ever have children, will I end up resenting them for the sounds they make? Will I distance myself from them? Will there ever be a cure? Will I become a hermit — a completely miserable shut-in?

What is misophonia? And why blog about it?

Literally, misophonia means the hatred of sounds. But for an unknown percentage of the population, it is a diagnosis for an auditory condition that causes a person to feel strong, negative emotions in response to a specific group of everyday sounds.

 

Crunching, lip smacking, licking, slurping — the sounds people typically  make while eating or drinking.

Sniffling.

Muffled music or a television in nearby room.

Silverware clinking against bowls or plates.

The crinkling of plastic bags.

Heavy breathing.

Sometimes, the condition also includes a strong, negative reaction to the person seeing a certain motion, such as the tapping of a foot or a person biting their fingernails. These sound and sight triggers create such a reaction within the mind of the person who has misophonia, that the person may feel the need to flee from the sound, suffer quietly with their anxiety about the sound, cope by using earplugs or listening to music in headphones, or even lash out at the source of the sound (think “fight or flight” when it comes to misophonia).

There is no cure for this disorder, and it does not seem to be recognized much by the medical community. But I know all to well that this condition is real. I have misophonia. This blog space will serve two purposes. First, it will provide a first-person account of life with this disorder in the hopes of raising awareness about misophonia. Second, it will provide resources for people who have misophonia and their loved ones.

Many blog posts are to come. In the meantime, please familiarize yourself with this condition by visiting the following websites.

The UK’s site about misophonia

A short documentary about misophonia

The facebook group for misophonia

This blog will remain anonymous.