There are numerous things that affect one’s ability to work and be a well-adjusted member of society. One overlooked aspect is how you smell.
Four South Africans have come forward to talk about how their lives are affected by the offensive odour they emit.
All of them say they suffer from an extremely uncommon condition named trimethylaminuria (TMAU) which was formerly named fish odour syndrome, that is either genetic or acquired later in life.
Although it does not affect them physically, they say it causes extreme emotional distress and can lead to self isolation, depression, and even suicidal ideation. The most concerning part, according to these individuals, is that there is no cure.
For 27-year-old claims administrator Lihle, who is from Knysna, working has also been ‘’a living hell” because of TMAU. She says the office environment has been horrible because her colleagues constantly remind her of how bad she smells.
WATCH: Lihle explains what she deals with
“I understand the odour is something that is unbearable, but can people please be considerate of those who have it and cannot do anything about it. I am not saying that people are not allowed to express themselves, but they should be more empathetic,” Lihle says.
According to Mebo, a group that conducts research on systemic malodour disorders, this condition develops when the body is unable to convert trimethylamine, a chemical that has a strong smell and is produced in the gut when certain foods are broken down by bacteria, into another chemical that does not smell.
This means that trimethylamine accumulates in the body, enters bodily fluids like perspiration, and eventually leaves the body by the breath, sweat, urine, or, in the case of females, vaginal secretions.
According to the National Human Genome Institute, a urine test is used to diagnose trimethylaminuria.
“The person’s urine is tested to look for higher levels of trimethylamine. Testing can be done by giving choline (a nutrient which is present in eggs, liver and poultry) by mouth followed by urine collection a certain number of times over a 24-hour period,” says the organisation.
Annie, a call centre manager, believes she has the genetic version of TMAU because she remembers having an odour from a young age and, as a result, experienced a lot of bullying in primary school.
“As an adult, it has not gotten better. When I first started my current job, a colleague had to train me. During the course of the day, I started to smell bad. I recall her walking off to go tell the other woman who was working there about the smell. So, working has been miserable,” she says.
Annie says people should be more sensitive and not jump to the conclusion that it is because of poor hygiene. “I did not ask for this. It is very difficult to live with this condition and get judged and ridiculed daily. I am just a normal person with an invisible disability. I deserve respect too.”
Sphiwo, who is 26 years old, thinks he has the acquired form of this condition because, in his opinion, his nightmare started when he was 19 and enrolled in a bachelor of business programme in economics and finance.
“I stopped going to campus as I’d get reactions, people shifting seats on the bus/shuttle and students covering their noses at the computer labs,” he says.
He now works as a delivery driver for a large restaurant and says it has been a relief to be on the road most of the time and have little interaction with colleagues and customers.
Tshwane University of Technology student Rhulani, 25, started experiencing symptoms when she was just 15. At the onset, her friends would constantly offer her chewing gum and perfume. Rhulani is anxious about her future and says she will have to excel just to prove that she is good enough to get work.
The National Human Genome Institute says that it is possible for people with this condition to lower symptoms the of odour. “Avoiding foods containing trimethylamine and its precursors (choline, lecithin and trimethylamine N-oxide), can lessen the effects.”
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