Alison's story

I am a 65-year old woman, and I have suffered from the condition I now know is called paruresis for most of my life. It started when I was 17.

At primary school I trained myself not to use the loos all day because they were disgusting and I couldn't stand the smell. It wasn't a big problem, however. I could use the smelly loos if I had to.

At secondary school sometimes girls used to climb on to toilets in the next door cubicle. You would suddenly see a head appear over the dividing wall, and the person would make some crude remark. They did this to anyone, not just me, but it unsettled me and made me more aware of the environment outside the cubicle. Then, one day, when I was 17, I went with my mother to watch my brother play in a school cricket match. In the interval we went to the toilet. There was a queue and one cubicle. The door had a panel made of frosted glass, so that as well as hearing the person inside you could see their general shape. When it was my turn to go into the cubicle I found that, although I had thought I was desperate, I couldn't do anything. After that I found I couldn't 'go' if I thought anyone might be listening.

It has been a continuing problem for me, but I have tried hard not to let it stop me doing anything I've wanted to do. I got married in my 20's, and had three children. As was the custom in those days, while the children were young I didn't go out to work. Later, however, I did get a job. The most difficult aspect of this was having to attend courses. If it was an all day course the afternoon could involve a feat of endurance with an uncomfortably full bladder, and no opportunity to relieve it. I tried going out during sessions but that didn't work. It was not really approved of, my absence was noticed, and I felt too time-constrained.

For many years I didn't tell anyone at all about my problem, not even my husband. Eventually I did tell my husband. He didn't seem to understand very well at first, but now he does understand and is very supportive. About 7 years ago I told my GP. He was sympathetic, and arranged for me to have some psychotherapy counseling sessions. They did help to some extent.

I have often thought what a strange condition it is. Something everyone does several times a day I find I have to do in secret. Moreover, however much conscious effort I put in to try to overcome this, I just can't, so it can't be my fault. But my greatest fear has been that someone would find out about this thing that's not my fault.

I have wondered whether my mother's attitude to toilet training could have had anything to do with it. When my first child was born, my mother came to help and presented me with a tiny potty. She said I must put my 10-day old baby on it after every feed as it was important to start toilet training early! She got quite upset when I refused to co-operate. I also remember my younger brother being severely punished for toileting 'accidents', which used to upset me.

I've learnt to cope in most situations, usually by avoiding rather than confronting the problem. Like other people on this site, I have found flying difficult, and sometimes haven't managed to use airport loos before I even get on the plane. The worst place I have visited for toilet design is Newfoundland, where there seems to be a standard design throughout – two flimsy cubicles side by side with a lot of space top and bottom. If you are in one cubicle you can see the feet of the person next door. I don't know if it's like this elsewhere in Canada.

During my lifetime the condition has caused me a lot of stress and discomfort. However, I have learnt to live with it and I have been lucky in other ways – I feel I have had a happy and fulfilled life – so far.

I am very pleased to have found this web-site. It's good to know that there are other people who have this problem and that you are all out there providing support for one another.