Table 6.

Have symptoms disadvantaged your daily life?

‘I have been kicked out of places, ignored in queues, rejected in interviews.’

‘During my A levels it was a very tough time for me socially, I was very anxious about TMAU which was my main focus and not my studies. I did not feel comfortable talking to pastoral support about this due to embarrassment, fear of lack of understanding and further ostracism. Through school I struggled to maintain friendships and never really fit into a group.’

‘Particularly at work, unable to attend meetings. I no longer have a circle of friends and no socialising beyond my immediate family.’

‘Broke up Uni, struggle to find work, cannot work anymore with customer face to face, cannot live anymore with someone, no partnership/relationship, struggle to go shopping.’

‘I had to leave my job of 25 years due to physical and emotional bullying I gave up a good pension and have worked as a gardener ever since. My tmau symptoms have caused social anxiety, and I have missed out on a lot of social events.’

‘I’ve avoided joining clubs and other social groups for fear of embarrassment. I’ve lowered my expectations of friendships, relationships etc.’

‘My last time at work was stressful (a) because of the work itself and (b) because of the odour. I felt suicidal. I retired earlier than I would have done if not for this condition.’

‘It puts you off trying to achieve anything as you dread comments coming your way.’

‘Conscious and subconscious fear at work and in social life.

‘I used to go out to pubs and clubs and when the symptoms became very strong I tried everything and eventually had to stop going out completely, I had to change jobs constantly and try to get shorter working hours.’

‘I have lost work because of my odours. Also I have lost relationships because of the shock that I smell badly. I have not had a relationship for 20 years as I am afraid of the inevitable comments.’

‘Not going to family events, missing out Not shopping due to fear of being in queue.’

‘Social interaction become a problem as my confidence is non existent.’

‘I don’t want to attend any social functions, no one wants to talk to me either’.

‘Difficult to work and socialise with people when experience negative reactions and comments.’

‘I have avoided getting romantically involved with anyone.’

‘People do not treat me as a human being. The neighbours all discuss my smell. People move away from me all the time. I have no confidence in my life to go outside, even going outside to buy groceries is a difficulty. No one talks or sits next to me at work. I just try to hide as much as possible. I am constantly paranoid, I hate my life.’

‘Because people can smell my symptoms and make comments it has lead me to have social anxiety and now I have no friends and only go out to go to work.’

‘Some people wouldn’t make plans with me, other simply don’t speak to me.’

‘I moved to working nights which has further impacted opportunities available to me.’

I have isolated myself because I’ve become so paranoid on how people will react to me. I don’t smile as much anymore, I’m constantly crying, I feel suicidal at times, it comes to a point where you feel like what’s the point of going ahead in your life.’

‘I’ve had to leave some jobs that I’ve loved just because I couldn’t cope with the comments, whispers and looks from others. I am too terrified and paranoid to put myself back into that situation again.’

‘I’ve been dismissed from job after job.’

‘I tend to put myself in less social situations and isolate myself.’

‘fear of bullying determines where i place myself physically in relation to others at all times so i never choose to be in a room with others, unless i have no option. I long for a job i can do at home to avoid ‘public’ work and transport. I have stayed in very poorly paid jobs if they gave me less social contact. i didnt take driving lessons because of enclosed space in car. i never socialise now. shopping only online. cut own hair.’

‘Not enough attention during education settings due to my perceived smell. Additionally, also avoid social situations and people generally avoid me.’