I Am Not Dirty. I Have Fish Odor Syndrome.
I live with a malodor disorder called trimethylaminuria (TMAU), also referred to as fish odor syndrome. Although I’ve been aware of my disorder for 15 years, I’ve never spoken about it to 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 9 years old… 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.
That 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. I never let others know how much their rejection hurt. I never let others know how much I longed to be “normal.” I hated my malodor just as much as they did, if not more.
The isolation was and continues to be terrible. Especially as an individual in my early twenties who is supposed to be starting life and gaining new experiences. TMAU has basically robbed me of my life. Nobody can understand the overwhelming anxiety that comes at the thought of stepping into public and interacting with others.
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.
Finally, I reached the point where I felt like enough is enough. I could not take the isolation anymore. I could not deal with being an outsider any longer.
Body odor is such a taboo topic that has been frowned upon, and people who live with it have been shunned and shamed for years. It is painful.
But I also believe raising awareness can make a difference if we speak out and let our voices be heard. If we inform people, so they are aware that malodor disorders do exist, this world would become way more bearable for those struggling in silence.
All I have been thinking since this year started, is that this has to be the year of change. This will be the year I take action and speak out against the constant ostracism. This will be the year I stop allowing my disorder to control my life and do what I can to raise awareness and make a difference.
Those are the thoughts that have been constantly running through my head, and of course changing my mindset from passive to action-prone is scary. I do not know where to start. I am confused as to how to raise awareness.
How do I get people to listen?
How do I get people to care?
I pondered this and realized, first I have to let them know me. Tell them my story. Be willing to make myself vulnerable and open for judgment.
I found the easiest way to do this was first by being as comfortable as possible. 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.
It was so freeing to share it and lift the weight off of my shoulders. My goal now is to share it with as much people as possible and spread the knowledge that some of us are born with malodor disorders. They do exist and no, we are not dirty. And it is time the world knew.
Goodness’ Youtube video “15 Years Without a Shower”: