By Tracy, United Kingdom, February 9, 2015
At almost 43 I have had TMAU since childhood though it was only diagnosed 3 or 4 years ago. It has destroyed every aspect of my life but it is clearly difficult for doctors, bystanders, family, anyone and almost everyone to understand the devastating effects it has on everyday living. After all for the main symptom of a disease to be severe body odour must be a joke and the fact that you cannot wash it off can only be a mistake…but it’s not. Heavy manure, garbage and rotten eggs to name but a few feels and is impossible to explain especially when it seeps through your very pores. Family won’t discuss it as if this will in some way protect you but it simply leaves no one to talk to. Years of GP’s dismiss the symptoms, have never heard of TMAU and when I finally found a doctor who had, she didn’t know how to test for it or more importantly how it really effects someone. Strangers get angry just in the moments they pass you or minutes if you dare get stuck in a queue. They can be gob smacked into submission shielding their noses, shout obscenities across the street and taunt you, give you filthy looks or just laugh in your face. ‘Can you smell that woman?’ – 20 feet away! ‘Someone smells in here!’ – nice and loud for everyone to hear. ‘She stinks!’ – my favourite! ‘There’s that girl that smells’ – strangers shouting down the road. People laugh out loud and open the windows. At school and work I was specifically encouraged and asked to leave. I have had air freshener sprayed on me, shouted at by neighbours, spoken about as if I am not even there and gossiped about outside my home – ‘if I smelt like that I wouldn’t go out,’ along with the advice to wash which everyone assumes I have never done. I used to feel safe behind my own front door but I have lost even that. I have never had friends, family that is left has kept away and have been without a partner for the last fourteen years and it will remain that way especially since my symptoms have become even worse and more frequent. Every step out of the door is filled with trepidation and every single possible interaction from the shop to the school to the passing of a stranger on the pavement fills me with visible anxiety. For most of my life I have not been able to explain what is happening to my body but it fills me with shame and disgust even though I finally know it is not my fault. My children keep me going but it is so incredibly almost impossible now to be motivated to do anything for myself. Every day is a fight for survival and for a life that I have never had. My TMAU is now so extreme that my entire house stinks of me every day. I am a local joke. The constant stress I am under is taking its toll because I cannot cope and I need someone else to be there for me besides me. I am a forgotten leper, a fairy tale ogre; isolated, an outcast, unworthy of time, understanding, help or freedom. I beg the medical community as a whole do not allow this lack of awareness, support or advances to continue – nobody deserves this torturous segregation. I have spent my life in hiding not wanting to inflict my hell on anyone else. I apologise for the lack of any positivity but doctors, counsellors, everybody needs to understand how really bad it is because just saying you smell doesn’t seem to cut it. I want to smile a lot more, laugh a billion times more and just be able to say I am happy. There’s nothing else to do but be here and I don’t want to simply remain this way.
Connect with others who understand on the international TMAU community: https://www.rareconnect.org/en/community/trimethylaminuria