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Speaking out because this is unbearable

body odor halitosis tmau bad breath trimethylaminuria malodor rare disorder tmau cure rare diseases

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#1 DestinedtoLive

DestinedtoLive

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Posted 24 July 2016 - 01:41 AM

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I've been aware of my disorder for fifteen years (malodor disorder) but 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.

Lately I have been going through a really low period emotionally. I keep reflecting on how different my life would be if I did not have a malodor disorder. I become depressed when I think 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 leave 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 .

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 could 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.

But talking about my experience is just the first step even though it took a huge weight off my shoulders. My next step is to share it. Share it with as much people as possible. So hopefully they will realize that every individual with an odor that they encounter is not a disgusting person with improper hygiene. No. Someone of us were just unfortunate enough to suffer from malodor disorders. And it is time the world knew.

Here is my story:

 

(The video is unlisted because I am still building up the confidence to make it public)







Also tagged with one or more of these keywords: body odor, halitosis, tmau, bad breath, trimethylaminuria, malodor, rare disorder, tmau cure, rare diseases


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