What I want you to know about living with a genetic body odor disorder

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Goodness Nwankpa.

I suffer from a malodor disorder called TMAU (Trimethylaminuria). 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.

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. 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.

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. The overwhelming anxiety that comes at the thought of stepping into public and interacting with others. Nobody understands.

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.

All that I have been thinking since this year started is that this has to be the year of change. The year I take action and speak out against the constant ostracization. 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 a passive to action prone one 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 that first I have to let them know me. Tell them my story. Be willing to make myself vulnerable and open for judgment.

I found that 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.

And 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 malodor disorders exist and we are NOT dirty. No. Some of us were just unfortunate enough to suffer from malodor disorders. And it is time the world knew.

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