My roommate smells, can you help me help him?

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My roommate smells, can you help me help him?

Postby inquiringroommate » Mon Jul 07, 2014 12:43 am

I am looking for some advice from folks who are living with TMAU. I have a roommate who just moved in a week or so ago and he has a terrible smell. I have read some of your stories and conversations and am pretty convinced he is suffering from this illness. His smell is similar to rotting fish or a dead animal, and it fills the house when he is here. We can tell if he has been in the bathroom or kitchen because the smell lingers. He is only 22 years old, very sweet, but very shy, and talks always from a distance (like across the room or from a different room). I suspect he knows that he smells, but I don't think he has access to resources such as this forum to find others who could help him control the smell and work through some of the psychological and social challenges. Reading through posts on this and other websites about diet and soaps, I am sure he is not consciously identifying strategies that would help him control the odor, and I don't even know if he is aware that TMAU is a medical condition!

The smell is also terrible for me and our other roommates. I recently had a friend stay and we ordered sandwiches, but the odor was so bad we lost our appetite :( I work in public health and with people with HIV and know that there are stages of acceptance for any stigmatizing illness. I don't want confront him if he isn't ready, but I also suspect it would better to be open with him, rather than live in silence with the "elephant in the room" (or more dramatically, move out!), which could make him feel even worse. So, please, could someone who has lived with this illness, and has received gentle and useful support from friends and relatives help me understand how I can help him control the odor?

Thank-you, and I appreciate and value your thoughts enormously. Learning about the experiences of folks who live everyday with TMAU has been a deeply humbling experience for me!
inquiringroommate
 
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Re: My roommate smells, can you help me help him?

Postby bigvern » Sat Jul 12, 2014 5:57 pm

hey up,,
reading between the lines from your post I suspect he is aware he may smell.
Its good to see you have been on this website and want to try and help him (and Yourself - totally understandable).
Not sure what to advise as being told you smell can crucify some people, with me I was told at work and all it did was spur me on to constantly go back to GP and eventually get diagnosed, so now at the stage where I can 'manage' the condition to a certain extent.

It seems your situation cant continue however, so I think an approach is needed, with sensitivity (goes without saying) and honesty (but not brutal),, in practical terms you could print out the relevant info from the website if they seem to be receptive to help.
http://www.tmau.org.uk/index.php/what-is-tmau
http://www.tmau.org.uk/index.php/getting-tested

prob not much help, but good luck
bigvern
 
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Re: My roommate smells, can you help me help him?

Postby beautifulsoul39 » Sun Jul 13, 2014 3:04 pm

Hi i agree maybe print out some stuff on tmau and casually leave it somewhere you know they can see ,to be honest they may allready know they have an issue but have tried everything im upfront with people and i respect people more for telling the truth,i think be honest offer help
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Re: My roommate smells, can you help me help him?

Postby PoetFire » Sun Jul 13, 2014 5:48 pm

Inquiringroomate, thank you for posting.

This is the first time I recall of a 'witness testimony' to what could be TMAU (or another metabolic malodor condition). Usually sufferers cannot smell themsleves nor it seems can close relations (and I suspect, perhaps around 20% of the population), so most of us are ironically pretty much in the dark about when we smell or not. I don't think even Dr Lachmann has 'smelt' a sufferer and he has seen about 300 patients. This is probably a main factor why the condition is unheard of by the public. meaning the suffering goes on without hope. A testimony from a non-sufferer could be very important to our community long-term.

You might be in a unique situation to see if the 'therapy' (mostly diet) works, in that you might be a witness to seeing if it works or not. However many of us are uncertain the diet helps, so if it was TMAU then I guess you would be able to be the first independent witness I know of that could tell in this case. It would be very disappointing if it didn't of course, meaning no resolution of the problem.

How or if you tell your roommate is a very difficult decision only you can decide. I don't know what I would do myself. If I thought the therapy would definitely work then it would be relatively easy I think, but as I say, this would be the first 'official' case where I would have read of someone being confirmed 'in remission via the therapy' or not.

If you don't mind me asking, is the symptom transient or all the time ? No need to answer if you don't want to. Also I wondered, when the smell is present can any others not smell anything ?
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Re: My roommate smells, can you help me help him?

Postby inquiringroommate » Thu Jul 17, 2014 1:54 am

Hi all, thank-you so much for your wonderful comments and suggestions!! They are SO helpful!!

Here is the update on the situation: I talked to my two other roommates and both of them (both guys in their 20's) say they can't smell him at all! One of them went into his room for a phone number and noticed nothing unusual. I am not sure if they REALLY don't smell anything (hard for me to believe!) or if they would rather avoid an uncomfortable situation (for example, having to take responsibility and talk to him about it), but at least one I know well and trust and really believe he can't smell anything. So strange! I know I am not crazy though, because my visiting friend had the same experience as I did.

PoetFire, your question about whether the smell is transient: yes. Sometimes he would be in his room for over an hour with the door closed, but the kitchen would still smell very strong. On the other hand, one time I ran into him in the kitchen and did not detect a smell at all while talking to him. I have noticed that the bathroom seems to retain the smell more than other places (particularly in the shower).

Taking your thoughts to heart I printed out a bunch of information about TMAU, including doctors known to treat the condition in our area (Boston), and tips about diagnostic tests and diet. My plan was to tell him gently that I noticed he has an odor and give him the information. I also wrote up a list of suggestions about how to control the odor in the house, including using a certain bathroom, keeping windows open for ventilation, going to the doctor and working on controlling his diet, socializing outside on the balcony, and keeping his bedroom door closed. Here is the sad part: when I got home after printing, he was gone! For good! I called my roommate who rented him the room who told me he had received a call that he found a job near his parents place and moved back! I am heartbroken. Was everyone else pretending there was no problem to avoid conflict or did they really not smell anything? Did he leave feeling rejected? I wonder if only I had talked to him sooner? Maybe I could have helped him? Where is he now? I am still considering getting his contact information and writing with the information, at very least it could help him find this supporting community and understand more about his condition.

Thank-you all for your thoughtful posts, and in general for the maintenance of this fantastic website, it is wonderful to see such a caring community exists for people with this condition. I wish you all the best, and I will definitely share what I have learned here with my colleagues, friends and family in hopes to raise awareness to find a good diagnostic test and cure in the near future. Also, I would be happy to share my experience/ give testimony if it would be helpful. Best of luck and strength to you all.
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Re: My roommate smells, can you help me help him?

Postby bigvern » Thu Jul 17, 2014 1:26 pm

Thanks for the update, briefly my experience and understanding is that some poeple can smell TMAU in small amounts whilst others never even notice.
I used to work with several people who knew about my condition and whilst keeping a diary about my diet I asked for daily updates from them and it was noticeable that some were obviously more able to smell the tmau than others. My wife claims she has never smelled it and I have also told mates , some say they have and others say not - I can honestly say the ones who say not were not doing it to save my my blushes, we mercesly take the piss out of each other and they would have only been too keen to take me down a peg or two.

I also know myself that my smell is very transient in nature..

Thanks for sharing and I think you did all you could as evidenced by your posts here. :D
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