Welcome to Health Care POV | sign in | join
Overheard: From the AA Staff

Passionate Responses Support 4S

Published September 16, 2009 2:39 PM by Frank Visco

As some of you may know, every  blog and article on the ADVANCE for Audiologists Web site allows readers to give feedback through comment sections. We launch a new top story on our Web site every two weeks as part of our Web update, and it's usually good for a few comments but, other than that, we typically get a spattering of comments here and there-maybe a few each week.

This isn't really disconcerting to us-we love the feedback, but we understand our readers are very busy people and that they can't comment on every single article and get into intense discussions based on our blogs.

However, so far this week, it's been a little different. In addition to the regular spattering of comments I mentioned above, our top story, "Selective Sound Sensitivity Syndrome" by Marsha Johnson, AuD, already has received 10 comments in just over 30 hours.

If you're unfamiliar with the condition, read the article, which does a better job of explaining it then I ever could. However, when you do, make sure to check out the comments at the end, because they speak, I think, to a definite interest in the condition (codenamed 4S) among the patient population.

The first commenter, a hearing aid dispenser from Long Beach, CA, made the point that while the condition is interesting, it is likely just a temporary psychological condition common among rebellious teens. It's a relatively fair point (teens are naturally rebellious), and it's also a somewhat common one (as the article explains it, this is a common assessment to 4S by those who don't have it).

However, the next nine comments all seem to have come from people who suffer from 4S. These people universally say they developed the condition as youngsters and have carried it into their 30s, 40s, 50s, and beyond. The say that they wish it was temporary because it alienates them and negatively affects their life. Take a look at these excerpts:

"I wish I could go unfettered to the mall or to a movie, or take a college course in a classroom, or do any number of things that people do, but I avoid anything that may expose me to gum cracking."

"I was almost in tears reading that someone finally understands what I am going through and is also trying to do something about it. I am so sick of doctors looking at me and saying they have never heard of what I was describing and that there was nothing they could do. This condition controls my life and is overwhelming at times."

"When will my "temporary" end? This does not subside. This is why there has been nothing done about it. Thanks again for this article and maybe we can get someone interested enough to find a cure for this phenomenon that lasts a lifetime."

It really is powerful stuff. However, let me point out, that this blog post is not meant to in some way gang up on the first commenter or anyone who has similar views (I actually greatly appreciate the input because it adds to the dialogue). In fact, if anyone else has a reason to believe 4S is not a "real condition," I encourage them to join the conversation in the talkback, because communication can only be a step forward.

Regardless, it's hard to ignore that there does seem to be some sort of disconnect here, and perhaps, as Dr. Johnson's article suggests, the condition should at least be considered by the healthcare community as we move forward.

The ultimate goal in healthcare should be helping people, and if there is the chance that research into this condition--even if some people may find it hard to believe--might do that, well, then I say, simply and humbly, "Why not?"

1 comments

Thanks for this post.

From 12 to 55, I honestly thought I was the only one on the planet with this condition. I had never heard of anyone else suffering anything like it - and I have a major in psychology.

One day, out of the blue, I searched on the Internet for "cannot stand eating noises", and I was stunned by what I found. Not only were there hundreds of people (I saw over 700 comments on one web page) reporting the same intense, instant, welling-up hatred of particular sounds, but the sounds were the same - principally eating and drinking noises. I hadn't expected to find anyone like me, let alone such a clear pattern or syndrome.

This hatred isn't an everyday dislike. I dislike the sound of crying babies, but that feels nothing like this. I don't instantly lose my cool over crying babies (and I fully sympathise with parents of crying babies - been there myself). 4S is like the irrational, but intense anxiety of someone with a phobia, except that I am not afraid of eating and drinking sounds - I simply CANNOT STAND them. I loathe them deeply.

Sounds that don't affect other people will leave me with every muscle in my body tensed and my mind screaming "STOP IT! STOP IT!" It is almost like there is an electrode in my brain that is connected to my "fight response" and someone has pressed the "big red button" that instantly switches it on, full blast. And as soon as the noise stops, the reaction goes away just as quickly, and I am fine. The reaction is very much tied to the presence of the sounds.

This is a condition that affects people's marriages, family life, schooling, workplace, and even just commuting on public transport or attending a cinema. I suspect it is more common than we realise, because most people with 4S try to hide it - they often feel like the only person in the world with it. When the whole world tells you that you can't be feeling what you know you feel, it is pretty overwhelming and you hide it with a sense of shame and embarrassment. I am told that people with Obsessive Compulsive Disorder often feel like this too. No one wants to appear "crazy" and so 4S goes unreported, unresearched, untreated.

The question is: who, with the qualifications and resources, will research it?

Ian October 6, 2009 10:24 AM

leave a comment



To prevent comment spam, please type the code you see below into the code field before submitting your comment. If you cannot read the numbers in the image, reload the page to generate a new one.

Captcha
Enter the security code below: