Hello,

I wanted my first post to be a long, exhaustive recount of my 20-year difficulties with my Body Odor problem, but I feel the need to comment on this present posting regarding ORS.

People were openly commenting about my various odors long before I came to realize that the problem was 24/7 chronic. Early on I figured my deodorant had failed, or else I should have brushed my teeth longer, etc., so was able to function in a normal sense, without the chronic worries about the responses of those around me which developed later.

I have listened to 20+ years of open, unrestrained, point-blank heartless comments about my stench (correct word). I have also listened to 20+ years of those same type comments made by coworkers, etc., when they didn't realize I was in the cubicle opposite them hearing every word they said. Indescribably painful to realize that the words you are hearing are being said about --you--.

I too have gathered the nerve to ask people close to me about the presence and quality of my odor(s), in the hopes of gaining some insight into something which I cannot detect 98% of the time...only to have them universally respond that they smelled nothing out of the ordinary. I at first believed their report, then began to believe that they were simply too polite to respond truthfully. I then came to realize that most of them had become conditioned to my smells, and so truthfully did not smell anything unusual.

All said, the nature and severity of the comments and responses directed at me over the years (overt or couched), have caused the same degree of mental and emotional anguish most everyone present here has expressed. Taking the emotional equivalent of a kick to the groin over and over, repeatedly, day after day, is a hard thing to deal with, especially being the social creatures we are (or used to be, or wished be still could be...). Some of us go into complete isolation; some build layers of scar tissue or armor plating; some take the only out that their pain seems to leave for them.

Others, as I am heartened to read, set about to diagnose and correct the source(s) of their problem.

My opinion regarding this topic is this -- perhaps I could be diagnosed as indulging ORS behavior. It would be a superhuman feat to NOT become sensitized to the conversations of those around you (real or imagined), when one has listened point-blank to so many conversations for which they WERE the topic of conversation/ridicule/derision. ORS to me seems an inevitable development after years on end of being the focus of societal disapproval for my odor. Of COURSE I am terrified about whether I smell: I seem to terrify everyone around me BY the way I smell...(!). If I had absolutely zero concern about whether I smelled in a manner which people found offensive, then I would be guilty of an entirely different sort of behavioral disorder, sociopathic in nature. It is common human nature to be concerned with how we are perceived by those around us. Obsessing over this perception might indeed be a bad thing, or it may simply be the best we can do with the cards we've been dealt.

An aside -- I have pulled into a parking lot at work or school on more than one occasion, opened my door, and within a few seconds had people in close proximity to me completely stop all conversation, look at me, look at each other, look back at me, then begin a mass exodus post-haste. I might have imagined this occurrence the first dozen or so times, but after seeing it happen countless times over and over, I cannot be accused of imagining anything. Attribute this perception to ORS if you must. Perhaps the individual who "imagined" people at stoplights giving him dirty looks wasn't imagining anything...

People deal with life as best they are able to. It is likely that every last person on the planet could use some outside influence to set

their lives in better order, myself and the originator of this post included. None of us are completely free of shortcomings, frailties, failures...or personality disorders, whatever the label.

I do agree that we should all strive to limit, as best we are able, our assumption of always being the focus of conversations around us. The main coping skill I have developed is to simply discount conversations around me which I cannot hear 100% of (takes a LOT of mental discipline and practice). Another coping skill I have developed is a sort of "up yours" response -- "If you don't like the way I smell, go somewhere else, or learn to deal with it, because I am not going away." (I spent a lot of years 'going away' from jobs, relationships, etc., trying deal with the pain.) The best coping skill, and one which I am still working to perfect, is the up-front interdiction of the responses of those around me, with a simple, straightforward explanation of why I smell the way I do. This seems to be the most effective, as people seem to be more willing to accommodate you and your odor once they realize it has nothing whatsoever to do with personal hygiene. This last approach takes a lot of practiced courage, of course.

My $0.02. Keep the change.

Pungent Pariah

"but I think what they were trying to say was that even a person with TMAU still suffers from ORS"

Yes, I know. That's exactly what I thought they were saying. I'm not sure why they told me I was completely misunderstanding the post, as everything that's been said seems to support my initial interpretation.

Let me be clear: at no point did I think you were both telling me that my TMAU was all in my head. I (evidently correctly) thought you were telling me that everybody with TMAU also has ORS - and I didn't say it the first time out of politeness, but quite frankly I found it a little offensive.

Look, I understand that you both have ORS. I am not disputing the fact that you both have ORS, and I'm very happy for you that you have a diagnosis and are now able to get better. I'm also very glad that you have posted about this subject - as I said before, I think it raises an important point, and I hope other people will take it on board.

But, why oh why, just because you have ORS does it mean that I have to have ORS too? I agree with pungentpariah - if it didn't bother me at all then my behaviour would be straying into the type one would normally associate with a sociopathic personality. However, worrying a little about TMAU isn't the same as having ORS. I've cut and pasted the below definition from the OCD centre in LA to better illustrate my point:-

"Olfactory Reference Syndrome (ORS), also known as Autodysomophobia, is characterized by excessive, irrational fear that one is emitting a foul or unpleasant odor. The obsession may be an exaggerated, disproportionate concern with a natural body smell, or may involve an entirely imagined odor."

Do you see what I'm getting at, now? ORS is exaggerated, disproportionate or entirely imagined. If your behaviour and concerns are IN PROPORTION to the problem, then you do not have ORS.

Well, as I've already said, my TMAU is not the worst thing that has ever happened to me, nor is it the thing that I spend the most time worrying about by any stretch of the imagination. I understand that smell is highly subjective, and that on a good or moderate day only some people can smell my TMAU, and a lot of people can't. I do my best to tackle the problem, and if there's nothing I can do then I tend to ignore people who are being rude (which definitely doesn't happen every day).

I do NOT imagine that people are talking about me, and unless I overhear them clearly talking negatively about me and am sure that they aren't talking about something else (e.g. something bad I said, my performance at work or whatever) I usually give them the benefit of the doubt, and assume they have far better and more interesting things to talk about than my rather dull life.

I can't remember which one of you said that the guy with the car windows was crazy, but really, is that generating a supportive environment for him to talk about his problems? Like you said, you're not doctors - how to you know it's not true? Look, admittedly we are talking about three or four incidents in my entire life when my TMAU has got to the worst level imaginable, and it hasn't happened for some years; but on those three or four occasions, you would DEFINITELY have been able to smell TMAU strongly if you were standing four lanes of traffic away from me and I had my car window rolled down, let alone if you were sitting in the next car. As it happens, I tend not to leave the house when it flares up to this level, so I've no way of testing my supposition, but trust me it CAN be that bad if the TMA levels are high enough. Also, perhaps this person's TMAU actually smelled like BO. Mine doesn't, and it's not unusual for people to complain about a bad smell on a train or in a cafe only to go a bit quiet when they realise it's coming from a person. (And no, I'm not imagining that - the last time this happened was three years ago in Starbucks, and the person sitting across from me actually said "oh, wait, is that somebody's BO!" and then proceeded to giggle as if it was the funniest thing that had happened to her all day. Which it probably was.) Perhaps his DID smell like BO, and people really did give him dirty looks?

OK, I know I'm starting to ramble again, so let me see if I can make my point really clear and succinct this time.

1. I understand that you are saying that people with TMAU also have ORS, and I'm sure it's true in a lot of cases.
2. I appreciate this post, and think it's important.
3. I do not agree that just because you have TMAU it means you will also develop an associated psychological disorder. Some people - like you guys - will, and others won't. Everybody is different.

You may or may not realise it, but the response you've had to this post has been incredibly supportive. Everybody believes that you have ORS, and people have been understanding of and sympathetic to your problem. All I'm asking is that those of us who have TMAU but not ORS are afforded the same courtesy and respect. I do not believe that telling us that we have imagined people's responses or that we definitely have an associated psychological disorder (and one, incidentally, that my TMAU specialist has never even mentioned to me) is very supportive.

To be even clearer, I am not disparaging this post in any way. I totally support you both, and wish you all the best in your continued struggle with ORS and TMAU. I was only taking issue with one tiny little element of two people's posts, and I hope my position is now clearer.

Again, good luck with everything. I understand that posting on these boards is particularly stressful for people with ORS, and I applaud you for doing so for the benefit of others.

All the best,
TM