My Life As a Walking Taboo: Living With Malodor Disorder

August 10, 2016

I suffer from a malodor disorder called Trimethylaminuria or TMAU. Although I’ve been aware of my disorder for fifteen years, I’ve never spoken about it with anyone before (although others are very much aware of my odor). It’s something I always try to ignore and not dwell on although it affects every aspect of my life. This whole thing started when I was nine… or probably that is as far back as my mind allows me to recall. I remember other kids laughing at me as they gathered together to gossip. They traded knowing looks with each other before they shot a quick look at me and held their hands over their noses. “Fish. It smells like fish!” One of them would shout and they all dissolved into fits of snickers and laughter.

vlcsnap-2015-07-31-10h33m04s153That was just the beginning of a lifetime of being the lonely outsider that other people didn’t want to hang out with. I learned to hide my emotions. Push it aside. Keep it locked in. Never let others know how much their rejection hurt. Never let others know how much I was dying to be normal. I hated my malodor just as much as they did if not more. There was a point when I went through an extended low period emotionally. I spent days continuously reflecting on how different my life would be if I did not have a malodor disorder. I became depressed when I thought of how much I would have accomplished if my disorder did not have such a psychological hold over me. I stopped attending school and barely left my apartment because of it and finally I reached the point where I felt like enough is enough. I cannot take the isolation anymore. I cannot deal with being an outsider any longer.

Body odor is such a taboo topic that has been frowned upon and people who suffer from it have been shunned and shamed for years. It is painful. But I also believe that raising awareness can make a difference. If we speak out and let our voices be heard. If we inform people so that they are aware that malodor disorders do exist, this world would become way more bearable for those suffering in silence. One afternoon I simply sat down on my bed, turned on the camera and started talking. I let my story find its way out. I spoke about my experience with malodor disorder and my wishes for there to one day be a cure. My goal now is to share it with as much people as possible and spread the knowledge that malodor disorders exist and we are NOT dirty. No. Someone of us were just unfortunate enough to suffer from malodor disorders. And it is time the world knew.

Here is my story:

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