Table 9.

Problems experienced with living with TMAU

‘Growing up I felt like I had no medical or pastoral support for my condition. I often felt guilty and as if it was my fault that I smelt badly, and often blamed myself for eating the wrong thing etc. Because TMAU is so rare and so unique I did not feel like I could compare myself to another group, or another disease which made me feel even lonelier. There was very little post-diagnosis support from the NHS. I think that TMAU has a huge impact on quality of life, and should be given the same attention as other conditions which also affect quality of life. There are serious psychological and social consequences of living with this condition and I think it does often prevent me living a fulfilled and productive life.’

‘The mental effect of the condition is far impacting than people may realise. In my case, I have considered suicide, more so at the onset as I couldn’t find any resources to assist. Having a contact with medical professionals who may be better placed to advise on the effect of some treatments or diets that are often tried in the hope of treating or minimising the odour, will be of a great help to all suffers. Many are desperately looking for help but can’t find any.’

‘More psychologists to help us have a more bearable mental health.’

‘The sense of isolation and fear of going out is hard to cope with sometimes. I would like to see more opportunities for support groups to aid speaking to and possibly meeting other sufferers. At times I’ve felt suicidal so this is probably the case for many others. It would be a real life line.’

‘This is a SOCIAL condition. We are not ill physically. Mentally, yes. I feel depressed and suicidal all the time. I feel like a leper and try to keep away from people. People look at me with disgust.’

‘I feel desperate and drained of energy in my search for help and support from medical professionals.’

‘It’s a hidden disability even though we look fit and healthy it impacts your life massively often causing you restrictions in work, family, travelling and being sociable.’

‘Mental health is so important, it took me a long time to get to a good state where I am able to function. This condition paralyzes all aspects of your life.’

‘My entire life has been absorbed by this condition and it is a daily struggle to live life fully and normally. Every area of my life is impacted, I am grateful to have this survey to express my feelings on how this condition affects us not only physically but mentally. I cannot express enough how important a cure is to me and my quality of life.’

‘I think more support is needed, especially with children, life is hard for them on a normal day, but to have this condition on top is so hard, and more help psychologically is desperately needed, with school counselling.’

‘I believe this is a such a horrible deliberating condition, it stops you from functioning as a normal person, you can’t eat, you can’t speak, you can’t work, you can’t socialise, you can’t do anything, it’s depressing, I am always paranoid and I’m exhausted.’

‘The hugely restrictive impossible diet to limit symptoms and lack of treatment are exceptionally difficult to live with.’

‘It really does affect every aspect of your life.’

‘I say a prayer every day we can find a cure so I can try and start living a normal life.’

‘I would like TMAU to be recognised and shared so that others can be made aware of it and understand more. Because so many people with tmau are being treated so badly and unfairly and suffering alone.’

‘This condition has totally ruined my life! I have no confidence, am paranoid, have depression and mood swings. I am terrified of social situations and of going back to work. I am tired of having to live this way and wish that there was finally a cure so that I can live the rest of my life like a normal person. A normal person who doesn’t have to worry about being the smelly one that everyone talks about!!’

‘If this condition became officially recognised for the terrible damage it causes to sufferers, that would help. That said,TMAU has destroyed my life, and the only hope remaining is that a cure is found.’

‘Everyone has pressures of life from time to time but TMAU makes living so much harder. It makes surviving so much harder. Every part of life is affected and the pressure is continuous.’