I'm talking about Misophonia (or Selective Sound Sensitivity Syndrome, also known simply as 4S). It's not fun, it's bizarre, it seems fake. How could a person have such rage/hatred (it really means "hatred of sound") over something so insignificant as hearing someone sniff? Hearing someone chew food? Hearing the clinking of forks on china plates? It doesn't make much sense, but I'm here to tell you that it's real.
Our son began exhibiting these symptoms last spring. At first he just didn't like hearing us chew food. That seemed normal, eh? Who likes to hear someone chewing loudly? But it escalated to rage/anger and pretty soon he was inconsolable when he would hear us sniff, eat, or use utensils on glass plates/bowls. At first we thought he was being silly, or was just tired, but it wouldn't stop. It got worse.
Brandon did some research and found out about 4S. We were elated! An answer! This is EXACTLY what he had. But most doctors have never heard of it. There is no cure. It's not because of an "ear" problem --it's in the brain.
We started using forks on plastic plates and using plastic bowls for his sake. We're careful about sniffing too much around him or apologize as soon as we do (apologizing and acknowledging his suffering helps a lot!).
School was hard for him, though. Can you imagine sitting in class, having misophonia/4S, trying to work, and it's the peak of cold season? Sniffles all around. Luckily, he had a great teacher and the school facilitator met with us and we established an IEP for him to test alone. We also set up some reward systems to help him focus better. We bought ear-muffling headphones to help him during his worst triggers (and so he can eat with the family!).
[I was really concerned about lunchtime, but guess what? Very loud places (like a loud elementary school lunchroom) that drown out simple sounds are good. It also helped because he was eating at the same time as the other kids (many with Misophonia agree with this, but they're not sure why it works). ]
It's been rough for him because he doesn't understand it. He doesn't want it. Last year he described it as "anger in my ears" and about 6 months ago he asked, "why was I born this way? Why do I have to have this?"
Last night I showed him a segment from 20/20 on Misophonia. As we watched it, he said to me: "I thought I was the only one who had this. I didn't know other people did, too!" I think it gave him hope. Hope and happiness to know he's not alone. (And I should point out that his situation is not nearly as dramatic or awful as the teenage girl's. He does break down very much like the young man towards the end of the segment, though!)
We're continuing to implement some desensitivity therapy and other coping mechanisms so he can live a full life. Dating is going to be REALLY hard if he can't control his anger in the face of chewing food, eh? We're trying deep breathing, leaving the room, focusing on other things, etc. It's not a quick-fix, and I'm fearful other triggers may manifest themselves in the future (which is very common, unfortunately). But I am hopeful that he can be able to cope. I'm also starting to do more research and to look for therapists in our state (or nearby states?) that have experience working with patients who have misophonia. I want him to be happy and healthy and truly? It breaks my heart that he has to deal with this.
Do you know of anyone with misophonia? Do you have it and didn't know it?