All About Misophonia

WHAT I'VE LEARNED ABOUT MISOPHONIA SINCE TAKING ON THE MISOPHONIA WEBSITE,

SUPPORT FORUM AND FACEBOOK PAGE (which is a lot)

As told by people with misophonia; in their own words.

The first thing I have learned is that almost every visitor to the website leaves two similar comments. Firstly, they are amazed to find the website and had never heard of misophonia before. At least 90% of those making this comment go on to say that they are:

a) amazed that there is an actual name for something they've been dealing with for years

b) are happy to find out that the disorder is something that other people experience (not that they want other people to have misophonia) because they thought they were the only person who had the sound sensitivity that they do

c)  want to find out everything they can about misophonia

d)  want to share this new information with the other people in their lives to show them that they aren't a freak; that sound sensitivity is a real disorder and that they haven't just been being a jerk.

“I am so glad I’m not alone! I can range from a 5-8 depending on the sound. I cannot stand the sound of people eating, smacking gum, blowing, or spitting. I love my husband, but sometimes he makes me want to punch him when he makes certain sounds. And if I ask him to stop he gets angry with me. Maybe I can show him that I have a real problem, and I’m not just being irritable!”

“I found out about misophonia just yesterday… It was a great relief to me knowing that this is a real thing and not my imagination. Having dinner with my family drives me crazy, I can’t stand the sound of them eating, I really hate when there’s a leak and I can hear the water dripping, and there are so many other sounds that bothers me, but those are the worst…I don’t think my family understands what I’m going through, and even if I tell them about this I know they wouldn’t believe me.”

“I’m just glad that I finally found a place where maybe I can work this out, especially among other people that understand.”

“I wondered quite frankly if I was some kind of freak that would never belong anywhere.”

The second thing I have learned is that far too many of the young people (let's say under the age of 18) have a terrible time of it in regard to how they are treated and mistreated by their families, friends and teachers at school. Some of these young people report being ostracized by their family and have family members (even parents) who do not support them in any way and unfortunately, go so far as to antagonize them with taunting, mimicry and telling them to "grow up" and "stop seeking attention." Some of these parents, friends and school personnel purposefully create trigger sounds and situations to irritate, annoy and sometimes enrage the person with misophonia. Why would they do this?

“Wow, I honestly feel so relieved. I used to be so ashamed that I was like this, always wondering what was wrong with me… My mom yells at me and gets mad at me when I leave the room when she eats and it makes me so sad because she’s my mom and she’s supposed to be help me through everything. Its gotten to the point where she accuses me of making it all up just because I don’t wanna be around her. I hate to say it but this is ruining our relationship. I’m only a teenager, I don’t understand this anymore than she does.”

In school, at times, teachers don't allow sufferers to escape trigger sounds (leave the classroom). When the person flips out and becomes stressed, verbalizes their pain or leaves the classroom without permission, they are disciplined as though they are out of control having no good reason for their behavior. The younger the child, the less control they have over their own lives and they seem to be the ones that get the worst treatment by friends and the adults in their lives:

“"Well I’m 12 and I know I’m a little young but I really need help. My parent and my whole family know I have this but they just take advantage of me and use my reactions as amusement.”

“I’m so, so impossibly happy to see this website. I don’t think anybody realizes how big a deal misophonia is, or even what it is. I’m 16 and I’ve been dealing with misophonia for years. I’m mildly triggered by breathing, but my HUGE issue is chewing. Even when the person is chewing with their mouth closed, I can still feel it and it crawls under my skin but I know they can’t help it.”

“I’m 13 and I can’t remember when I got misophonia, I only found out this is an actual thing and I’m happy because I thought I was the only one who hates noises. I start crying in my room when I hear sniffing and we all have hay fever I wanted to know if there is a cure for it yet?”

“Once it was used against me, my father antagonizing me to the point of a mental breakdown. We were in the car, and he was angry with me and started eating as loudly and as disgustingly obnoxious as he could. I couldn’t do a single thing about it except cry. It was horrible.”

“My family gets mad at me and tells me to just block out the sounds but I just can’t! I get so angry and anxious to the point where I just lock myself in my room and breakdown. I’d say I’m a level 8-10.”

The third thing I have learned is that almost every new visitor to the site takes the misophonia self-test to see where they fit in with others who have the disorder. Most people report being a "5" or above (on a scale from 1 to 10) and very few people take the test and report being only mildly involved with the symptoms and consequences of having misophonia. Unfortunately, there some people who do report being a "10."

“I am a Level 9. My friend’s dog is currently chewing on a bone, and the thought of strangling her is very comforting. I’m getting anxious, nervous, shaky, and extremely angry.”

"Omg, I think I’m a 10… This is really bad. Well, luckily I take it out on myself. Preferably biting my arm really hard for really long. Until the discomfort or the source of it goes away. Either that or I bang my head. Usually both, really extreme. Is that 10??"

"Meaning I have hurt myself. I never physically hurt another person or animal. But I do fantasize about hurting people."

“I always thought I was insane. I’m 17 years old and since about 11 I’ve had extreme  bad experiences with ‘trigger’ noises, getting up to a 9 sometimes a 10.”

In fourth place, I notice a trend in which people with misophonia describe the unfortunate circumstance of accumulating more triggers as time goes on. Many people leave comments indicating that they expect this outcome. Often times, I suggest to them that they’re not locked into this fate. I always try to present alternatives without being insensitive to their concerns and fears.

“I think I am a 9. It just keeps getting worse and worse and worse. I can’t even describe how helpless I feel right now.”

“Despite receiving therapy and hypnosis it has worsened considerably over the years and I have so many “triggers” now it would be almost impossible to live comfortably with another person, so I live alone with my 2 dogs. This condition has ruined my life and I feel cheated out of being able to live a normal sociable life like most people do.”

Also, people sometimes isolate themselves from society to avoid experiencing triggers and the problems they present. Some people isolate themselves because they are worried about how their reactions will be perceived or how they will react (yelling at the source of the trigger, confronting the offending source or using more extreme methods of coping).

“I am 64 years old and just today I learned about Misophonia. I have suffered with this condition since I was a teenager and it has progressed to a level between 6 and 9 depending on how tired I am. I have been so terrible to my family, esp. my husband. I could not stand to hear him eat, drink, breathe, and just about any sound he made, Snoring was so bad I could not sleep with him at all, we had separate bedrooms. I tried so hard not to let these little things bother me, but I just could not control it. I would say things to him, like do you have to make that sound when you eat, or anything to make him aware it was irritating me, then the hurt look on his face and I just wanted to bite my tongue off. I would usually find some excuse to leave the room when it was level 9. I would never hurt anyone physically, but if looks could kill he would have been gone a long time ago. He finally divorced me 6 years ago, because he couldn’t take it any longer. We were married 24 years. I really did not blame him.”

“I am a level 9 on this scale and I have struggled with this I think since I was born. I’m 50 now and my triggers over time have grown. I now have so many I have chosen to retreat from society for fear of letting go of what I call '2 seconds to serial killer rage'.”

"It’s instant and almost uncontrollable. I am not afraid of people, I am afraid of me around people and animals. I know it sounds horrible but I think if I actually let loose of this physical urge it would be euphoric and so I retreat from humanity.”

Considering the amount of pain people report and the hopelessness they feel, one might think that providing a support website, forum and Facebook page would be emotionally taxing. In truth, at times it can be. However, if I ever need a reason to continue or if I start to feel that the project is not valuable to others, I only have to read comments like these to know my work is important and appreciated:

“So glad I found this site. I feel less alone now.”

“Thanks for being out there for those of us who suffer as well. It’s like I’ve just been thrown a lifeline!!!!!”

“This is a great site and I definitely will be frequenting it and learning more.”

“Just reading the comments have calmed me after my day at work today.”

“I felt such a relief finding this website.”

“My spouse and I have been lucky. Our son Peter managed to finish his homework using the ideas he had from your blog. It’s not at all trivial to be offering tips and support that is usually given by people who are just out to make money. And we want the website owner to appreciate this. The specific explanations you have made, the simple website navigation, the friendships you can supply through the support forum are all spectacular and it’s assisting our son and us with this seriously important issue. Thank you for the whole thing!”

“I am so glad I’m not alone!”