"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.